Uganda has implemented a comprehensive national response to sickle cell disease, including mandatory newborn screening, local manufacturing of rapid diagnostic kits, and hydroxyurea availability, with Busoga region (where 23% of the population carries the sickle cell trait) serving as a pilot site for the IMAR comprehensive care pathway framework that integrates screening, treatment, and community awareness to reduce the disease burden.
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World Sickle Cell Day
Added:Right assurance take off by a production supervisor checked off by the production manager then we start the production process. So the way the machine run the machine is going to pick the bottom cetate to analyze if the white is good. If it's not damaged is going to be moved to the next step well aligned.
Then from there the uncut sheet is going to be cut into small strips and that cut strip is going to be placed inside the bottom cassette. From there the the bottom cassette the machine going to pick the top cassette put on top of the bottom cassette and make sure it's very tight. Then the next step will be that assembled cassette with our strip. We have top, bottom and the strip inside square sealed. It will be fed into aluminum foil together with the desk stand material and get sealed from there to be to the secondary packaging area where people are going to pick 25 of them putting them in the box. Then someone is going to steal the box. So we have two sizes of the box. We have 25 tests and 40 test depending on what the customer want. So by the time the uh the cassette or what we call our chest leaves this production area, it's all sealed >> and produced under CMP currency following ISO 13485 following NDA National Drug Authority guidelines.
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Okay. Thank you. Thank you, B. And uh everyone will come back from the matching.
Yeah.
>> [clears throat] >> who managed to go with us.
Okay. Okay. That is good. So water will be supplied so that you can quench the thirst and uh I I hope the discretion is going on Mr. the band is still here I think waiting for the official opening of the function. Okay.
>> As by the program, >> let us request uh before we we go with the band, I want to echo this message.
And before we go to the official opening, we are requesting our guests to lead us to inspect the stores.
>> The stores. Yeah.
>> Then after inspection of the stores, we shall come back here and do the official opening.
>> Yeah. I think the band you can also take your seats for now.
You know, you know, you do the greater job.
I want to request the one in charge to come and guide our guests, the one in charge of inspection of the stores.
Please Yes. But once again, we would love to recognize the presence of our dignitaries.
Yes. Uh we have uh we have representatives. We have representatives from the Ministry of Health.
Yes. Uh we have uh Dr. Charles Chiaga is with us here. Yes.
Maybe you can wave your hand for recognition. And uh we have uh Dr. Carol.
Uh you're all welcome. We have Dr. Oo Charles from Ins Health is with us here.
Dr. You're welcome. And um we have Dr. Gerard Deongji, the assistant commissioner nominical diseases, minister of health.
You're you're welcome. Yes. Uh Dr. Ajambo Miriam is with us here, the national seeker sale coordinator. Yes, she's Yes, you're welcome, doctor. And yes, we have representatives from the Ginger uh regional referral hospital.
Dr. Yai Alfred, the yes, hospital director is here with us. You're welcome, doctor. And uh we have representatives from uh the district or city health office. Yes, you're welcome.
We have uh Dr. Andrew Valu from the Minister for Health, you know.
Reverend Henry coordinator and medical programs diois That's Reverend Henry.
Yes. And our partners, you're all welcome.
Dr. CH, the executive director of JCRC, she's here with us. And it seems the whole team from JCRC is here because uh Dr. Francis Sali, the deputy executive director of research and clinical services is also with us and Mrs. Sea Gala, the one with the money, the one with finance and operations. She's here.
If you need money, you know the person to see. Yes, you're all welcome.
>> And uh we are waiting for a chief guest who is going to lead us at the inspection of the stores. Uh so this let's just uh uh hold on for have entertainment from our culture troop.
of refreshments.
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I don't want Hello. Hello. Hello, ladies and gentlemen.
Ladies and gentlemen, Please stand up and we welcome our guest of honor.
>> Entertainment. Entertainment. Thank you so much. Thank you. Thank you.
>> Thank you. Thank you ladies and gentlemen. We've been blessed with the presence of the director public health who is none other than Dr. Daniel Chaw who is going to be the guest of honor this event. Ladies and gentlemen, right now he's inspecting the stores and from there we'll have some items and have our event open officially.
>> Meanwhile, I'll request the band to be ready. Make sure you are ready. We are need you any time we are officially opening after the inspection of the stalls by our chief guest.
>> The band be ready with the anthems.
Joint Research Clinical Center Uganda.
Ladies and gentlemen, That's not I know my We don't need Yeah.
That's important.
Yes.
Thank you.
You guys see?
the person that city clerut going to the other one was located here. So he's in charge.
>> Yes.
>> So he could come We need to have been given to us.
>> Yeah.
prayer. From prayer, we're going to invite find out the city person be the best person to to to do that but if they are not around that's why you said Dr. I didn't find out.
>> He said they're not around.
>> I don't know if there is any other person.
>> You see?
So, and we don't want if they come any person. Is it there? Is there any LC person?
That's the thing.
>> You can find that.
Zakina.
Wonderful.
I can't stop.
You don't have that much to communicate I don't think that sanction >> you cannot withstand we shall find out.
So let them come back from from Miriam.
It was very nice.
They broke up.
Is that done.
>> I think okay Okay. So I told you so that the regional referral welcomes the city.
Then we go on as as as a >> who are these ones.
This is not the last program by the way >> that I so >> what is exactly here? Let me just >> I might not >> right now >> because after after what is presentation of advocacy and patient now listen >> communication and this is you it's fine now we Move this one. Then we go here and this one come is after you. You see this?
>> Are they Are they done?
Colleagues, once again, may we join hands and welcome the guest of honor who is none other than Dr. Daniel Chawin, the director public health from the ministry of health from the inspection director and the team. We want to once again welcome you as you take your seats. May we stand up and welcome them and also get ready for the anthems band director and the team. Before we sit, we have to have the anthems and have our ceremony open officially.
May we stand up for the anthems.
Students, as we stand for the anthems, or ginger district anthems.
Thank you. Thank you so much. May we give them a a bigger round of applause.
But also colleagues, before we sit, we need to pray for this function. And also, I want to invite anybody, any volunteer who could be closer to God than all of us. have the card.
>> Okay. Okay.
Alhamdulillah.
In the name of in the name of Allah the most gracious, the most merciful.
All praise is due to Allah the Lord of the worlds.
We thank him for granting us life and the opportunity to gather on this important day as we commemorate the world cell day. Oh Allah, bless all those living with cell disease. Grant them strength, healing, patience and hope. bless their families, caregivers and health workers who support them every day. Oh Allah, guide our communities to embrace testing and counseling so that people can make informed decisions and seek timely medical help. Help us to end stigma and discrimination against those affected by cle cell disease and instead show them love, care and support. We pray for increased funding, resources and research to streng cell prevention, treatment and care services. inspire our leaders, partners and well-wishers to continue supporting this noble cause. Oh Allah, make each one of each one of us an ambassador in the in the fight against cell disease through awareness, education and compassion. Bless this event, its organizers, participants and all our efforts. Grant us success in improving the lives of those affected by sick cell disease.
Amen.
>> Thank you.
Wow. Wow. Thank you so much to the band.
May we clap for them once again. That's such an interesting entertainment. Our colleagues once again we want to welcome all of us to the national commemoration of the world sales day and this time around Ginger city you are the wi you are the winner in the selection of which place should host this very important event we want to welcome people from Ginger city and the neighboring districts once again may we clap for ourselves also ladies and gentlemen let's not forget that still we still have a ball.
I want to pass this message. Are we social distancing?
Are we social distancing? Students, can we try to social distance so that we don't spread Ebola that is still amidst us. So colleagues, right at this very moment, I want to take this opportunity to welcome uh the ministry of health officials led by the director public health. Thank you so much for this day. We want also every person I mentioned colleagues, I want I want to ask you to clap for them because they made this day possible. We're going to welcome our partners, the joint clinical research center. May we wave Jess, where are you? We need to see you.
Thank you. Pal Bank. Pal Bank, we need to see you. Can we wave? People need to clap for these people. Michael Scientific, thank you so much for coming. We also want to recognize the presence of Baylor, the team from Baylor. Thank you so much for coming.
Maybe let us first recognize the schools that are around. Okay.
Where are you?
We have where are you girls high school?
Let me go to St. Elisa. St. is a senior secondary junior college.
So we have a number of schools.
How come students don't have energy?
>> Thank you so much. Let's continue with our programming. Our partners, all of you, we recognize you. Thank you so much for the effort. As we move on with this program, we recognize each and every person that has contributed to the success of this event. Also, join me welcome none other than Dr. Susan Nawad is the commissioner for National Health Laboratories. May we clap for her. Thank you so much doctor. And at this very moment, I want to welcome uh welcome remarks from the hospital director Dr. Alfred Lei.
May we clap for him as he comes. He's going to welcome us here. He's going to make us feel at home. So, thank you, doctor. You're welcome.
the chief guest for today's occasion represented by the director public health Dr. Daniel Chabazer the honorable minister of health for busoga kingdom Dr. Andrew Balo, directors, commissioners and teams from Ministry of Health, the CEOs of our development partners here present, the district technical and political leaders with us today, the city technical and political teams present, staff from Ginger Regional Referral Hospital, the various teams from our developing partners that have been mentioned, the cultural and religious leaders present, the different schools that are with us today, members of the press, ladies and gentlemen, I want to take the honor to warmly welcome you to Ginger City today.
You are most welcome to this very place in Ginger City. Can you clap for yourselves for being here?
My colleague, the city town clerk is engaged and I've been asked to step in as his colleague to welcome you here. So you are warmly welcome to Ginger city uh this grounds uh when we are celebrating the world cell day today.
My name is Dr. Alfredi.
I'm the senior executive consultant, Ginger Regional Referral Hospital.
Allow me say one or two things on behalf of the teams in this region uh before we move on.
Number one, I want to appreciate the ministry of health leadership and teams for choosing to host this year's commemoration in Ginger City, Busoga region. And this is for a very very important reason why we are appreciating you. We know that Busoga is among the two regions with the highest burden of cle cell disease in this country as per the national survey of 2013.
The prevalence of the cle cell trait in our region is above 20%.
compared with the national prevalence of 13%.
And Ginger Regional Referral Hospital posts one of the largest clinics for cle cell care in this country. We have about 1,500 children registered for care in our Nalena campus and we run a clinic every Monday to see them.
In the main campus we have about 726 adults. Those above 12 they we transition them to the main campus and they have their own clinic.
Now in terms of the regional disease burden of course malaria leads however malaria is now followed by the non-communicable diseases including cle cell disease and this puts a lot of strain on the healthcare resources we have that's why we appreciate the fact that this day we are here in Busousa we are here in Ginger city to raise awareness about SQL cell to talk about the interventions the contributions of of the various stakeholders partners and to see how we further move forward in bringing down the burden of this disease in the region as well as improving the care the quality of care we pro provide for those who already have the cle cell disease. Allow me highlight the key issues that we have observed in relation to cle cell disease. One, we have had the issue of limited access to diagnostic services.
The diagnostic kits in the recent parts past this has been a big challenge.
Access to diagnostics, screening services and diagnosis has been a challenge. But thankfully uh the situation is improving and we believe that as we move forward the test kits will be more available and accessible to our population so that we can uh improve increase access to the diagnostic services.
Number two, you uh chief guest, you remember that sick cle cell disease uh clients require a lot of blood when often often to run they run into crisis.
They need to be transfused and we are we have a regional population of about 4.5 million people that is in 11 districts and one city but we don't have a regional blood bank at the moment. So we have one collection unit, blood collection unit uh that has not been able to uh serve us sufficiently. We depend on blood from Nakasero. Sometimes we run to Mallay region region referral and the others. So we want to appreciate the minister of health because I'm aware that you are working with us uh with support from KA to see how we establish a regional blood bank for this region and we pray that this is expedited and it comes soon.
The third point is access to hydroxy ura. This life-saving medicine has not been readily available.
Just about half of the our clients have been able to access it but largely we have relied on donations and other support from partners. But again I want to thank government and the ministry that this has now been included as the pro uh program medicines and now I want to urge our facilities the health center force the general hospitals and the regional referral that we we can now order and get this medicine and thankfully hydroxy urea is also now being manufactured with in country within our country and I think we should appreciate that that this is a very huge milestone stone that we are going to have it more accessible to improve the quality of care we provide to our population.
The other point has been the limited capacity at the lower level health facilities to provide appropriate care.
What has been happening that uh clients identified and just referred to the regional referral that's why our clinic is very heavy but we want to build the capacity of the lower level facilities to be able to provide these services and the capacity I'm talking about is in terms of the knowledge and skills diagnostics and the relevant medicines and blood so that they can provide services for our clients especially in the health center force and the general hospitals so that we decongest the regional referral hospital.
Chief guest we have had limited community awareness as another point that many people are not aware of their status and many of them get married without knowing their status and we know that this is what also is resulting into the high burden.
Now we need this last couple of weeks there has been heightened commit awareness through various interventions.
I want to thank the media. They have taken our voices to the public and many people have come aware. Many have screened we targeted to screen about 10,000. I think we surpassed the target.
I think the program manager will talk about the details but from what we have done just in the in the last couple of days you can see the prevalence of the SEO cell rate is about 23%.
That solves how high the burden is in this region. Finally chief guest and members uh the is of newborn screening for SQL cell is gaining root. We appreciate that. But we also need to heighten the idea of premarital screening, counseling and screening because we need to close the tap. If we don't close the tap, then we will continue to need more and more resources to provide care to those who already have uh this condition. So it's my hope and wish that we'll join hands with ministry of health with development partners with all the stakeholders in the region to address this challenge of the high burden of sosale which also is compounded with the high burden of malaria and which consumes a lot of our healthcare resources. I want to end by thanking the chief guest for making it to this occasion and all your teams from the Ministry of Health, all our development partners, all the technical, political, cultural and religious leaders in the region for doing your part to support health services delivery in this region. I thank the various district health teams who have been going out implementing a number of pre-commoration events the results of which we are going to share today. Thank you. Let's maintain that momentum. Let our efforts not end today. Let's continue with what we have been doing to make cell care available, accessible, of high quality and also reduce the burden going forward. I say all this for God and my country.
Thank you so much.
>> Hello. Is that clapping enough for such a detailed speech?
Let's once again clap for Dr. Yay. Thank you so much, doctor.
And uh colleagues, we continue to welcome each and every one of you for this very important event. uh we recognize the presence of every digtory amid the stas and uh we know that for sure this event is going to go as planned. Uh colleagues I want to welcome none other than u the sales coordinator.
This is a national figure and uh I want us to put our hands together and welcome Dr. Miriam Majambo. This is uh let me introduce you when we are in the middle of this of so that everybody sees you.
May we clap for Dr. Dr. Jambo before she speaks. Dr. Jambo is behind every planning of this event and we want to recognize her and thank her. Thank you so much doctor and may we may you communicate.
>> Thank you so much MC. Just allow me take this podium.
Hello. Okay. Thank you. So, um the leadership of the ministry of health of Uganda um here led by the director general health services at the ministry of health and uh all the line commissioners here present. Um, Mulan Referral Hospital, Mccer University, Uganda Pediatric Association, Ginger Regional Referral Hospital, uh, the city leadership, the cult, the Busoga Kingdom, um, the religious leaders here present, our partners, and I will mention uh, you uh, one at a time because you've done a very Great job. Joint Clinical Research Center, Terumo, Baylor College of Medicine, Raising Hope International, Uganda Rescue Foundation, Quality Chemicals um Industries Limited, the the the Sparkco Uganda Panaffrican Research Consortium, Clinton Health Access Initiative, Human Diagnostics, Microheim, Nikosam, Uganda Protestant Medical Bureau, Orocure, MJ, Biomedics, The Secosell Alliance, Busoga Health Forum, Secosell Students Association, Katherine Phil Support Initiative, all implementing partners within Busoga region and all district leaders here present and those that are not here.
I want to greet you this day and thank you for making time to be part of this commemoration. My name is Dr. Miriam Majambo. I work with the Ministry of Health and I'm the national coordinator for cle cell disease. I have come to brief us about what has been happening before actually uh we came here to crown it up. Now um the ministry of health decided to host the commemoration in Busousoga because Busoga sub region bears one of the highest prevalences of cle cell disease and cleo cell trait and you will hear from the data that I'm going to share after these few remarks that um what we have in re on record even from way back in 2015 is still the same picture and maybe even getting worse. So we decided to come to Busogam and and the issue was not to really like look up for this day but to do pre-commemoration activities in the first place and what was um in the pre-commemoration activities. We have been in all the districts of Busoga region creating awareness on cle cell disease and maybe many of you have had um our teams on radio and watch them on TV but we have also gone to schools and marketplaces uh creating awareness on this cle cell uh disease and and what it means to have a trait and then we went ahead to test to test many people within the busoga sub region and I'm going to share the preliminary um findings from the testing but um I want to appreciate our partners so much for because it wouldn't have been possible for Ministry of Health alone to do all that has happened within the past one month prior to this commemoration. We have tested over 10,000 people and uh we will continue to test even after commemoration. But the to to know that in just one month we were able to test 10,000 people is is is quite you know very impressive. I want to thank our foot soldiers. I call them foot soldiers because they have moved in this sub region and done lots of activities. I want to thank the the Uganda students association. Let's give them a round of applause. They have supported us. They have reached many schools in Busousoga subab region and they have even helped us to mobilize the students that are here today. Now I want us to go to some of the of the data of um what we have found and today we will also be awarding the best the best district uh in performance in regards to the pre-commemoration activities. So like I said, we we started testing on the 19th of May and creating awareness on 19th of May 2026 and uh we we we went on up to yesterday 18th of June 2026 but also yesterday we had a media engagement uh to crown up all the pre-commoration activities. Now the people screened in total are 14,082 and uh then the districts that participated are nine. I know that bus sub region has 11 districts and one city and and somehow the others lagged behind and and uh we will hear the the ones that have participated and those that have been left behind. Now out of the total uh uh number of of patients tested the the ones that have cle cell disease are at about 1.6%.
That is uh slightly above the national average which is about 0.7 or we could say 1%. So Busoga is slightly above the national average in in regards to cle cell disease at least for this data that we have. Then um we we we got a a donation of hydroxy ura from one of our our partners and thank you Baylor. Uh so up to 776 patients on hydroxyurea got refills during that period. Um so so we we reached up to 7,000 students in schools and then 637 newborns were screened. In in terms of uh the markets visited 926 people were tested in the markets and 210 people were tested in the churches and and the mosques. Um in in in regards to the outreach camps, we had up to 649 people tested during the outreach camps and uh 932 people tested in facilities. Now this is a summary of how the districts performed.
Ganga districts take the takes the lead.
Ganga are you here?
Oanga some vibe.
O okay takes lead and they have tested up to 8,300 people.
But but I know that our partners also concentrated support.
So so thanks to to JC. Thanks thank you raising hope. actually raising hope even gave them more testing kits and gave them a gazelle. So we also know that there are some factors that are playing here but you were also very enthusiastic and you have done a great job. Then after after um I district we have ginger city following with 4,410 uh people tested ginger city. Oh yeah.
Then we have Vui. Bugary. Yay.
Bugary are you here? So Beri follows with uh 582 people. I know you might say that's a very small number, but I know that BUI was very innovative to have these 589 people tested. They relied on their their um partners locally and did not have any national uh support. uh in terms of partnership. So the 589 tested we really do appreciate Camuli follows with 528 people and and I need to cross check because uh I think when we had a camp there the number was higher than this. I will cross check with the uh the person who compiled. So the other districts that did some form of testing were Calo, Mayug, Namutumba, Namayingo and Wuend, but you didn't do a very good job. Now the there are districts that didn't sufface completely. They have either they tested and didn't report but we don't see them anywhere in our database.
So Luca district, we don't have you anywhere. Ginger district we don't have you anywhere reporting to us and um Bjiri district you are also not anywhere we'll get to understand why we have not got any numbers from you now um when it comes to to to the the the the results the summary of the results 75.2% 2% of the tests were actually normal results. We had HBAA accounting for 75.2%.
HBAS, those that have the trait, the carriers are accounting for 23.3% of uh the total numbers tested. But you realize that we always quote the national average to be between 13 to 15%. So, Busoga even from the numbers that we've tested so far is uh is is is is you know um above the national average and like I said those with the disease were up to 1.6%.
And um um so so this is the summary of u of what what we did in the testing. I know there were some challenges because at some point we wanted confirmatory test kits and uh we we were delayed. Busaga sub region had not had not yet received supplies from NMS. We had to you know try and and solicit from our partners uh to give us some kits and at some point some districts had only solubility tests. So we understand there were those those setbacks but we will continue to support the region even after the commemoration because trust me this burden is high. uh you know the higher the number of those with the trait the higher the chances that a a person with a trait will meet another who has it and they get married and and you know that when a carrier marries a fellow carrier the chances of them having a child with cle cell disease are as high as 25%.
So we need to ensure that we get these carriers and educate them accordingly so that um they don't they don't marry fellow carriers they get people who are AA because we we actually have many of them who are AA. So it's easy to find one who is AA instead of getting a fellow carrier and uh you know getting sick but we are also going to intensify care and treatment. uh we are going to go into our our health center force and ensure that all these positives are are actually in care and they are offloading the regional referral of the burden that they have at Nalufena. So we are going to be following up uh care and treatment in an integrated manner. We are also going to continue to s to work with the with the other arms the the our csos and our cultural and religious leaders to be able to speak to the people so that they get to know more about this disease and today you you realize on the program that we'll be launching task forces in in categories of of that have been stipulated on the program. So we have a lot in stock for you. We just urge you to work closely with us and we should be able to fight this disease to its very end at some point. I want to thank you for listening to me and uh I wish us all a very beautiful ceremony. Thank you so very much.
>> Yes. Thank you Dr. Miriam for doctor please.
Okay. Thank you very much.
>> Yes. Today we are commemorating the world sale day and uh this is an international international commemoration. So the hashtag if you're on X Instagram and uh yeah you can do even Tik Tok the hashtag is uh world cell day. So as you here you can pick up your smartphone and uh you hashtag and show them the world that we are celebrating here as uh we appreciate the caregivers and the researchers trying to stop this uh okay the hashtag is a world sale day 2026.
So you can hashtag on your ex Facebook or Instagram or any other social media where you are. Our chief guest we have so many dignitaries here that I would love to recognize especially locally government is uh is led by I can see the RDC or Bujir is with us here.
You're welcome, sir. You can stand up for recognition. And assistant RCC George William, I think I saw him around. Can stand up for recognition if you're still around.
Yes, we have Reverend Narus representing the bishop is the coordinator health and medical from Dasis. You're welcome, Reverend.
And we have um our chief guard. Yes. Dr. Vasoga with us here and his delegation. Dr. Vasoga, you're you're welcome. You're welcome. Uh we have representatives from the NRM. I I see the women's uh entrepreneur league chairperson for Ginger City. Um that's uh Miss Edith a Mama Irish commonly known as Mama Irish. And uh we have representative from the Osoga Kingdom, Dr. Balu Andrew is with us here. Yes, Dr. You're welcome. We have Mr. Moses, the ED of SOA Health Forum is with us. Uh yes, culture addressed. You're welcome. Mr. Moses to this commemoration. Yes. And we have representatives from the schools. We have Ginges, the headmaster. I saw him around. The headmaster of Gingses, the mighty school. We have Gipra.
Jipra the head teacher or any leader from the school. You're welcome. And we have Okash uh the the school leadership of Okash. I saw the headmaster.
We have PMM girls, Ginger Vocational Training Institute, Ginger College, the head teacher of St. Elisa. I saw him somewhere there in the tent. You're welcome, sir. and uh several others uh district and city leaders are with us here uh this as we celebrate or commemorate uh the world cell day 2026.
Yes. So right now we are getting into I'm inviting the ginger cle cell warrior group that is going to give us an awareness interude that's giving key factors key facts about the cle cell disease treatment nutrition Ebola infectious disease awareness and a lot more yes here has got more rec more people to recognize or locally here with Fore!
Foreign! Foreign!
Executive Member.
They gave us so many students to test.
So warriors Yeah.
Yes.
[clears throat] Yes. So warriors, can you take us microphone?
Can you record this speech?
Then you can microphone.
What?
I would like to recognize the presence of our chief guest. Ladies and gentlemen, warriors, families, doctors, friends. Good afternoon. Marlo is my name and as our motion states the world the world poses to say today but for us every day is cell day. We are the ones who who wake up and fight a battle before breakfast. We are the ones who know hospital corridors like always at home. We are the ones who we are the ones who smile through pain who plan life around medication. who keep dreaming even when our bodies say stop.
The world sees limits when they hear us go. We see fighters. We see resilience.
We see purpose that that refuses to die.
To every child diagonized, you're not broken. You're notless. Your life is mark but an exclamation mark. And to every parent carrying fear, your child is not a burden. They are a gift the world needs to understand better. To every warrior tired of explaining pain, we see you. We believe you. You are not lazy. You're not weak. You're waging a no one else can. Today we ask the world for three things. Number one, test. Know your genotype before love before marriage before building a family before before building a family. Uh second uh cle cell is not contagious but ignorance is learn with us not about us. Third give us school give us jobs. Give us love that stays even on crisis days. And to my fellow warriors keep breathing keep living keep showing up. Some days showing up means running a marathon.
Other days it's just it just means staying alive. Both are victorious. Cell may touch our blood but will never touch our worth. We are not our pain. We are not our diagnosis. We are warriors. We are proof. We are purpose. Happy cell day. Live. Let's live loud. Let's live deep. Let's fight one breath at a time from impossibilities.
Turning to give a speech on I recognize all us to celebrate the day together.
We carnes and strong our may but still our Europe is not our name. We rise again.
When we fall apart with courage, living in our hearts, each scar we bear, each tear we have cried reminds us the strength we have. We are more than pain.
We are more than disease. We are more than struggle. No one sees. We stand brave and free. We are survivors. We are warriors. Happy world day for God and my country.
>> Time has come. Years have gone by.
People ignorant about cell. Young and old. Rich and poor people are dying.
Hello. Come on.
Excuse me.
Mama I know.
Yes.
Okay.
You're welcome.
You're welcome.
Thank you.
How are you?
We are going to look about population.
Good morning, Daddy.
Uh, Mustafa, what's population?
>> Excuse me, Tisha. May I come in?
>> Population is the transferring of plants.
>> Excuse me, Tisha. May I come in?
Thank you.
Rachel to late every time was sick. He was sick.
I was sick.
>> I did for her work.
>> As who?
>> As her friend. your friend since when he shall forgive. I forgive what forgive her.
She's my friend.
teacher. She's my mama. Sorry.
>> Sorry, my friend. Sorry.
So, let us take you to your mom.
>> Let's go home.
>> Just go home.
>> Let's go.
>> Sorry.
You'll be fine. Sorry.
Thank you.
Yes, mama.
Fore speech.
>> [laughter] [screaming] >> Baby go.
[laughter] Sorry.
money.
Mama transport [laughter] neighbor transport.
That's doctor.
by transport.
Hello.
Hello.
[laughter] neighbor. Mama, mommy.
So Yeah.
Baby.
Mommy. Awesome.
I'm Mora.
I'm not a problem.
I'm not a killer.
I'm just a sick.
I'm known disaster.
I'm dreaming of a world that is take my free.
I'm dreaming of a world with no discrimination.
I want to share some love. Live in comfort.
I want to live in joy.
No, no, no. Let's go beyond and reach ahead.
The children are dying, are dying in pain.
Let's go beyond and reach a hand.
Let's love.
Oh, years have gone by. People are ignorant about cell. Young and old, rich and poor people are dying in all the parts of the world. We're here to tell you what cell is. And we can stand together to overcome.
Listen to me.
Let me tell you all about it.
is real but invisible. [singing] That's why I'm called a waror.
We can buy just you and I's [singing] responsibility to know >> everybody's respons possibility to know about it and I will tell you tell you [singing] >> we fight fear we fight pain we fight ignorance we fight shame we fight for love we fight for water medication We fight for the whole world Africa.
[singing] >> That is a kind of blessing that we pray for God to provide for everything that they need. Every time it's reality, we're telling the community rich positivity providing ability now.
reason everybody's responsibility to know everybody's responsibility to know where they are papa buff papa papa buffbody buffa When you fight, you fight for me. Every love for you alone.
Number n Wonder Wonder wonder And I will be faithful to God.
You change to God.
Raise your hands.
music.
[clears throat] I was put step to the left. Shake your shoulders.
I move to the front. Nift your arms up with the air. Get down on the floor when you get back out. What you feel?
A big raise your hands just like you know big I know who I am to the topome When I'm falling down the air when I'm falling down.
>> Wow.
Really? you people are we clapping really are we really clapping before before we leave uh we have something that we wish to share with you and I believe you can stand with us among our cell association of Uganda Ginger cluster we are having a colleague I I know she's in pain, too much pain. But I would request anyone.
M was diagonized with a VN condition. Both her hips collapsed.
apparently wheelchair but unfortunately we failed to get a wheelchair that's why I requested they carry her to here the hospital requested for 50 millions for the surgery and as I talk to you we only have 3 millions in our account unfortunately last week on Tuesday the doctors worried us and they told us she only has one month.
She might remain in a wheelchair forever. I therefore call upon your support.
I had a box and I gave it to one of the organizers here. I wish I could get that box.
Ma, any contribution that you drop in that box will be of great help. Like you see they bringing her but in too much pain. I believe any amount corrected for her will be highly appreciated. We save her life. This is a fellow warrior with a daughter of 6 years. She's 27 years of old. She's 27 years old and she has been well actually she started in being in that condition like 2 months ago. So we therefore call upon your financial help.
Thank you. Thank you so much. I mean this is a big call and after this big team performed here a few people came and give them some money. Regardless let's stand with Martha. I request us regardless of what you have, you just someone bring a box here or a chair where they can put something for ma.
Okay, let's stand up. Let's pick something from our pockets and buy math a wheelchair. And that's Ma's daughter in front.
>> Ladies and gentlemen, DJ, is there any suitable kind of song that you can put for each and everyone that is standing to come and give something for Martha?
Let's contribute something for Martha.
DJ DJ DJ Thank you so much students. Yes, please.
>> Yep.
Okay. Um this this is what these patients go through. Um yeah, we have many of them like this and there is actually a camp happening soon in Maago.
So we will need your contacts so that you can go and be benefit from that camp. Okay.
>> Wow. A big handcap for that. Thank you.
Thank you. Doctor >> Ginger Jon is going to provide you with a wheelchair.
>> Wow.
>> Okay. So the fundraiser is closed.
>> Thank you doctor. But uh still >> Wow. Wow. If you have something you can give her but >> thank you so much. The fundraiser is is closed. M has that wheelchair.
>> So honestly those who are giving just give and we close the you close the session. Thank you so much for the generosity.
>> Also any who is in charge of ma they can give us their mobile money number.
Who is in charge? Who can read us the number?
>> Yeah, thank you. Thank you for the giving.
Thank you for the giving. God bless you.
>> Meanwhile, I'm going to read the number.
>> Yes. 0751 >> 72 912 >> I repeat 0751 >> 0751 >> 72 >> 72 >> 999 >> 99 >> 12 >> one2 >> in the names of Navid Angela >> Navir Angel >> and MTN goes 0784 >> 07 784 >> 2 1 >> 2 1 >> 0 1 >> 0 1 >> 2 0 >> 2 0 Read it again.
>> 0784 >> 0784 >> 21 >> 2 1 >> 01 >> 01 >> 2 >> 20 >> in the names of Kagya Ma.
>> Thank you. So yeah, >> thank you so much. May we help Ma back to her seat.
Colleagues, once again, let's appreciate performance from the Ginger Warriors.
Uh Baba Sharon, where are you? Baba Sharon. Baba Sharon. Azi.
>> Now Baba Sharon represents like 90% of all of us mostly the men >> Baba Sharon mostly the men there is research shows that most children are in the hands of single mothers but these are not the men that are in this tent >> because if they were they wouldn't be here >> for Okay, thank you. Thank you the warriors for that might performance. Yeah, I think you can take your box.
Maybe this can give us some security.
Soon van.
Okay.
Okay. Thank you. Thank you very much. I think you can take back the box and uh thank you uh the director hospital director Ginger Hospital for the generity. Yes, we're getting a a wheelchair and uh the government for the operation the government of Uganda Ministry of Health.
Ministry of Health. Yes. Thank you very much.
>> Okay, colleagues and ladies and gentlemen, at this very moment, we're going to hear from our partners. These are the these are the brains. These are the men, the gentlemen that are behind all the good things that you're seeing here. The food, the nice ambiance, the the research around the SEC cells disease. So we want to welcome once and for first and foremost a representative from JCRSC joint clinical research center. May you come and take up you know the podium.
We clap for Jessi as they come.
The students in that tent. Why are you not clapping?
I want to hear a hand clap from down.
Wow. Thank you so much Jessi. Thank you so much. And also after JCRC, we're going to invite Terumo. Tumo also get ready. After Jess, then we'll be coming to the podium. Thank you so much.
Dr. Chabaya, Dr. Nabad, Commissioner, National Health Labs, National National Health Diagnostic Lab Services and all protocol observed. In the interest of time, I think they read out all the uh key people who are here today, I will give a very short speech in the interest of time.
I'm called Dr. Cisto. I'm the executive director of the joint clinical research center. And when I say joint clinical research center, most people know us for HIV work.
But we expanded long time ago beyond HIV.
And now one of the public health emergency in the country which is cle cell disease.
We are making a lot of inroads to see how we can support the warriors working of course with the ministry of health.
I would once again and I will not mention each partner by name to thank everybody.
First of all, we thank the director general for allowing us to co-organize this day with the ministry of health.
If I were you, I would give the DG absentia a big club.
That's why we are here on this platform.
But we reached out to many uh organizers, many um companies, many of them have exhibited here.
We reached out to also Baylor. They will come here I think and give a few remarks. But they are also working in the space of cle cell disease in uh caillonga.
They agreed to give us hydroxyura as we did pre-commemoration activities and they've also contributed majorly to this day. We thank all of you. Please let us give them a big clap.
There are many clinics around the country and JCRC is working on advanced cle cell disease.
There is primary you you had talks about closing the tap, increasing awareness and not having cle cell disease children.
We have talked about testing which is the theme for today. We have talked about linkage to care.
But as you saw this girl in the chair here, some of the patients don't even respond to hydroxyura.
Other patients they get complications like that.
And we are looking at advanced cle cell disease. If you get some time, you go to our tent, the first one there. We do a exchange of the SE cell uh cells and so that a person can live close to a normal life and as we come into Busoga region because this is not the beginning. We are going to stay here. We have a project and one of our our staff will talk about it. It's called IMAR.
Maybe we could also place a machine or machines like that in the uh regional referral hospital.
As we work on cell disease, of course, as partners to ministry of health, we will work together to make sure that as we come to Soga region, we have hydroxyura all the time in the clinics so that when we test and refer patients to these clinics, there is hydroxyura.
Yeah, you can clap. It's all right.
You had the um the warriors here. Very excellent performance.
We had your poems.
We had your wishes.
As JC as we work on primary, secondary and tertiary care, we are also looking for a cure for cle cell disease.
One of the things we are establishing now is an aborn marrow transplant at the JCRC and we are on a fundraising drive including talking to government for a bone marrow transplant you need to have a donor who is matched to you.
So beyond bone marrow transplant because only about 20% of people have a matching donors we are also looking at gene therapy which can provide a one-time cure. If we could cure first of all we have to close the tap that's very important but if we could cure cell disease very early during childhood would not get this kind of complications.
So for the warriors who are here today, what we are asking is that there is a vision and a future that we look to for curing cle cell disease. But in the meantime, we need to test, we need to access complimentary services, we need to access hydroxyura so that you are there when the cure comes.
We need to do these things as we wait for the cure.
With those remarks, I would like to close. I know someone is going to talk about Imara in more detail but the Imara project which is coordinated by the joint clinical research center and we are working with Terumo. We will donate 5 million to this girl or lady who was here while the operation will be made in a camp.
You can imagine all the needs of this this this lady at home, the people who are looking after her. So we hope that this will alleviate some of the stress. I'm sure there is a lot of stress.
And with those remarks, I would like to again thank everybody who is here today.
And uh the commemoration of this day I think is just to energize us to even do more than what we've been doing. Thank you very much.
Thank you so much JCRC. A big round of applause for joint clinical research center for everything you have done on this event. We want to appreciate you and colleagues. Let me allow me call Baylor Foundation BA Uganda. May we clap for them as they take the podium.
Thank you so much Baylor raising hope as you prepare partners. We have five five minutes each one of us. So may we speak within that time so that we have everybody at least have a minute or two. Thank you.
>> Yes. Our guest of honor Dr. Daniel Chabay who is representing the leadership at the ministry of health uh together with uh the commissioners present uh the other leadership uh the ministry that is present here today uh the local leadership the RBC's RCC's uh the clergy partners all the stakeholders our students uh my name's uh Dr. Dan Churaga.
I work as the executive director for the BA College of Medicine Children's Foundation Uganda.
We are one of the partners that is supporting the Ministry of Health uh to deliver highquality uh services across the country. We are currently working in close to 67 districts uh within the country.
uh we are proud and privileged to be partners in this uh national celebrations.
Uh when my sister Dr. Cece approached me uh to support uh this initiative I was excited and we pledged and I've made that commitment to ensure that um we have a successful function.
uh Bella Foundation Uganda over the last uh I would say three or so years we've uh picked and generated interest as well as a momentum to support the SEC cell disease response uh within the country. initially were approached uh by our partners in Texas, the Texas Children's Hospital Global Hope Project uh who indicated that uh they were able to mobilize resources uh to support the scale up of cell uh disease work within the country and we mobilized different stakeholders, different partners that included uh the Ministry of Health, uh M University, the Uganda National Health Laboratories and Diagnostic Services, uh the Uganda Pediatric Association and many other partners. And we started an initiative through Cayunga Regional Hospital, the scale program, the integrating and scaling up cell disease care in primary health services.
And the idea was that we had a distressful devastating condition that had largely been neglected where there wasn't so much uh support uh that was available. For example, if you looked at the Cayunga and surrounding region, there was only one cle cell clinic screening coverage was below 40% and they faced severe no stockout of critical uh medicines. So for many families cle cell disease was a condition surrounded by fear, misinformation, stigma and uncertaintity.
So at that stage of course we approached uh the leadership at the ministry as well as the leadership at Cayunga regional hospital who welcomed uh this initiative and we kickstarted that scale program and since the launch in October 2024 in Cyunga sub region alone over 17,000 individuals have been screened 439 people diagnosed with cle cell disease have been successfully linked to care. Also along the way, we've built the capacity of several health workers.
263 health workers across all facilities uh have had their capacity strengthened uh and improve their ability uh to diagnose and manage cell uh disease and uh since then we've expanded the initiative to the Lango sub region uh to Leela regional hospital and eventually we hope to expand in Tumbali but as well as across uh the entire country. So the partners have interest have indicated willingness uh to support us to mobilize resources and we are looking for partners that can join us uh to ensure that there's no child that is left without any support.
But also recently we partnered with uh the ministry and other partners to introduce the mandatory uh newborn screening for cle cell disease in Uganda uh so that we can have more children diagnosed and treated in life. So my hope and assurance to everyone here is that um there's a lot of interest there are many partners that are willing and happy to join us on this journey and hopefully we can work together to have a better uh harmonized and coordinated response uh so that we can deliver quality services uh to all the children, adolesccents and adults that need it.
Thank you so much. God bless you all.
>> Thank you Baylor. A big round of applause for Baylor. Uh allow me invite Microheim to fix and then from there we will come will come raising raising hope. May we clap for micro before the partner arrives on to the podium. May you clap for them until they reach because these are the reason we are here. Without them we have no job. Thank you so much my good afternoon everyone.
My name is Sonia Moij from Microheim Scientific.
I'm the product tech support manager.
Um I would like to appreciate the warriors who performed here and appreciate all the stakeholders.
Um, Microheim is grateful to be partnering with Ministry of Health um to combat this burden.
As uh Dr. Miriam Mojambbo had already communicated, you've all known how big the burden is.
After finding out how big the burden is, Microheim took the initiative to do local manufacturing.
Among the products that are locally manufactured is an RODT for SQL sale which makes it very easy for everyone to be able to screen right away from the grassroot as far as health center for health center tools. Uh way back it was really really difficult for everyone to screen or to get diagonized uh very very early or ve very easy because we would get the samples be transported to health center force or to regional referrals or to general hospitals to do HB electropharosis. uh some some some results would be gotten back, some results would fail uh to get uh diag uh get results in time and uh our children would die not knowing the cause. Most times they would be misdiagnos die before the age of five. But with this cle cell kit, the microcreen, it's a game changer. Uh we can screen as as early as at birth, we can screen before getting married, those youths before they get to uh commit uh so that they can know the their the status of their partners. and the ROD takes as a short period of just 10 minutes you're able to get your results.
Uh this awareness uh I would I would proudly take the credit that if it wasn't the microcreen SEO cell kit the awareness wouldn't be as big as it is right now because it is easy to use. It is it is easy to interpret and it is easily accessible.
Uh the advantage with having a local manufactured kit you get the feedback there and then in case you have any challenge with the kit in case you have any challenge in in capacity. It is very easy because it is manufactured here locally in Uganda and the facility is found in Ninda and the facility has the capacity to to uh serve Ugandans and East Africa and Africa at large.
Uh as we speak now um uh Ministry of Health uh took up the initiative of getting these kits and they already in the facilities they are being used. Even the screening that has been going on since May 19th microcreen was uh the leading kit being used.
uh we are happy to be uh the first local manufacturers and we are happy to partner with every Ugandan to combat the health burden.
Um when you you look at our health health security, Uganda doesn't have a health security because everything is imported.
Everything that we use is imported. So it's high time we embrace local manufacturing for good and my country.
Thank you so much Microhem Scientific.
A bigger round of applause as she goes back. Ladies and gentlemen, we recognize the presence of the Ginger City Rac.
Glad to see you and thank you so much for coming. Also, we recognize the presence of Professor Sara Chiguri.
Professor Sarah, may you wave to us?
Professor Sara is the head of the national cell task force. Thank you so much, Professor Sara for coming. Ladies and gentlemen, I remind us that there's blood donation is still going on. Let let us not go back home with that blood when someone else needs it.
Ladies and gentlemen, put your hands together and welcome to Cooperation.
But the partners are taking long time on the microphone.
The 5 minutes are turning into 7 or 10.
Let's clap for Terumo as they come.
Thank you.
Um, I stand on all protocols um that exists and I wish to um recognize uh the guest speaker. Uh my name is Eric Angula from Terumo and allow me to quickly in five minutes um read a speech from Terumo. Uh the GM of Africa uh Mr. Aong by was supposed to be here but because of other pressing needs unfortunately was not able to make it.
Uh but allow me to read a speech from Terumo. It's a real privilege to be here today in Ginger, Uganda on World SL Cell Day. Let me begin by acknowledging the leadership of the Ministry of Health, JCRC, and all the partners and clinicians and warriors who are gathered here today. This moment reflects a collective effort built over time through collaboration and shared commitment. Because when we talk about cle cell disease, we are not talking about an abstract challenge. We are talking about patients, about their families, communities and the warriors who are in this uh space today. Over the years, we have uh seen important progress. Awareness is increasing, screening is expanding, access to treatment is improving in many places.
And yet when you look more closely a pattern becomes clear. A diagnosis does not always lead to treatment. Treatment is not always sustained over time and patients often move through a system that is not fully connected. In many ways the challenge is no no longer knowing what to do. It is ensuring that care works as a system consistently and over time.
That is why today matters. The IMAR framework is not about introducing a completely new idea. It's about connecting what already exists, bringing together the different uh elements of care into a more coordinate uh coordinated approach across the patient journey from early diagnosis to treatment to long-term care and management. And importantly, this is not something that can be achieved by any one organization.
It requires partnership between government, clinicians, patient organizations, and system partners. What we see in Uganda today is a strong leadership in this direction. A commitment not only to expanding access, but to strengthening how care is delivered over time. A direction toward more coordinated care, toward stronger health systems, and toward better outcomes for patients. At Terumo Blood and Cell Technologies, we are proud to contribute to this effort, particularly in areas such as strengthening blood availability, supporting clinical capacity, and helping enable more connected systems of care. Our role is clear. We are here as a partner because sustainable progress in cle cell disease will come from systems that work reliably and at scale, not from isolated interventions. There's still significant work ahead today. We are we are an an important uh step forward and it is a step we are taking together because real progress begins when care is no longer a series of steps but a system that works for every patient. Thank you.
>> Terumo is good with keeping time at least the five minutes you can clap for them. Thank you so much colleagues. I'm running through the partners because I'm left with only two. Director Dr. Daniel Chavez, excuse me. Let's have all these partners give their speech and then we only two are remaining. Raising hope.
Raising hope. And then after raising hope, we'll have Busoga Hills Forum. And that will be the last. And Raising Hope, you're going within the five minutes, you will you will introduce the alliance.
In fact, the alliance members would come along.
Exactly.
Thank you so much for as you also get closer.
Dear guest of honor, allow me stand on the existing protocol.
Um as we join the world to celebrate World Cosell Day, it is actually a special day for us as Uganda uh particularly the cell community because it's a day to unite and raise awareness for SECell uh nationwide.
It's a privilege for us as Raising Hope International to be partnering with Minister of Health.
As Raising Hope International, we are strengthening healthc care system in collaboration with the minister of health and other stakeholders.
uh early last year we sourced for an international partner that is Novonodisk hemophilia and hemoglobinopathies foundation that is supporting uh a lot of uh cell program in Uganda now and it's through this partnership with NHF that we are now consolidating and calling all other civil society organizations s to come together and advocate as a voice. Today being a special day for cell community, I want to uh bring this to your attention uh director that we have formed a a national umbrella body that is alliance that we will be advocating under as civil society organizations in Uganda.
uh for the past number of months we've been able to uh support a number of districts to start with ginger we were able to capitate over 56 healthcare providers on knowledge on how to manage cleosal disease identification diagnosis and referral pathways. So we are happy that we are continuing to extend this to high burden areas and we are also able to support Eanga district with a point of care machine uh which was uh handed over by the national coordinator uh of the ministry of health program uh early this month and we also distributed over 3,000 testing kits to support the newborn screening program. uh it's an honor for us as uh cell advocates to see that we we have a number of stakeholders who are coming through to support cell program in Uganda. As an alliance, we are open to every um every player to support the program we are doing as the alliance. And I want to say this before uh the ministry uh in the next couple of uh weeks we will be making an official uh launch for the cell alliance Uganda where we want all civil society organization to rally behind and supportell communities in different parts of Uganda. Together we believe that we can put under our feet and we see mo most of these warriors live a fulfilling life. Thank you so much.
>> Thank you so much.
Thank you.
>> Just just a minute. Um I don't know if we'll get a chance. Um allow me introduce the secretariat of the alliance. The alliance has a structure.
Um we have the general assembly that is being chaired by our able warrior Ruth Nangja who has lived in secret for the last 50 52 years plus and the secretary of the alliance is Rogers. Please wave to the then we have the treasurer of the alliance uh that is Camar then we have the secretary uh that is Jinta and Henry.
Then we also have communication uh that is led by Ro sorry that is led by is led by Elyn Muiga and also deputized by Charles Kawesa. Thank you so much and as I finalize please support us. Please let's work together to realize impact in our community. Thank you. Thank you so much the students down. May we clap our hands for the alliance members at least. Thank you so much and also welcome Boga Health Forum in under 5 minutes our guests of honor and all protocol observed.
We are delighted to host you here in uh ladies and gentlemen, my name is Moses Changa.
I'm the chief executive officer of SOA Health Forum.
uh the forum which brings together all health professionals in this region and all leaders that serve to support health and development.
We want to let you know that Busoga is crying.
Busoga is in a crisis and this crisis can only be uh sorted when we get together.
Deoga Health Forum has tried to respond to the CEO cell uh issues through our malaria uh eradication program we've started where we are doing uh mass screening, mass testing and treatment.
But the problem is that big that it requires all of us to come down and work with these communities.
We realize that uh cle cell disease most of us have been approaching it from the health care system, health care facilities. But ladies and gentlemen, I want to let you know that there are so so so many cases that have not had an access even to health facilities and the approach that we want to take is that of the community systems. We want to call upon everyone here, every partner to look at our community resource personnels, our culture systems, our religious leaders, our local political systems as the voices that will reach the households because seclers are not in the on the street are not in the hospitals, they are in the households. So we would like to invite you to join us and we lay interventions that reach the households.
We stop we should need we need to stop waiting for these people from the facilities. Those who can reach are just a small number.
We shall continue asa health forum to do our continuous medic education which happens every Friday to empower our health workers because the survey we did just recently shows that still even as the health workers we still have a lot of ignorance about this disease and yet many of people run to us for solutions.
So we are calling upon our partners, the Ministry of Health to join us to strengthen our efforts in empowering our health workers in the region and promote the community health care empowerment uh so that we can fight this disease.
Thank you so much.
Okay, thank you so much colleagues.
Let's clap for the partners.
Thank you so much for sponsoring the event. Thank you for the mobilization, the awareness creation and every other effort that have you have injected into the the fight against cells. And at this very moment I want to welcome uh a patient representative. She's not a patient herself but she has lost two children to see health. Dr. Hope Ashiro let's welcome her in under three minutes. She's going to give us her story and let's clap for her as she comes because she has a cell story to tell and these are stories that we can listen to and get inspired. So let's welcome her. She comes.
Doctor, I have a few minutes to tell your story.
No, you can use the podium. Thank you.
Hello everyone. Good afternoon.
I greet you all. All protocol observed.
My name is Dr. Hope Fortunate, a mother of warriors. And the reason my speech has to be short is because the point has been made. I really want to appreciate the warriors who gave us the skit here.
Thank you so so much. I honor you. I felt like my two daughters were here. I could not hold back the tears because every struggle they demonstrated is really what I went through and what the mothers go through and what the the warriors go through. So say thank you so much. Keep hoping. We see you and we love you.
I want to thank all the partners who are here and everyone for what you have done so far. I am so grateful that finally this disease is being seen that the people who are affected are being seen and that we are doing something about it. I just want to say thank you and I want to add a prayer because my thank you is not enough. I pray that God will bless you individually. That God will bless your generation for what you have contributed. It's not just a job. What you're doing is not just a job. What you're doing is making sure that one less child suffers what we saw demonstrated here. That one less mother goes through what I went through.
I lost my girls. Mariah was only 5 years old in January 2025 and just two months earlier I had lost her elder sister Gloria whom I call sweetheart just two months earlier. That is the ultimate price a mother has to pay. But beyond that we see the ongoing daily struggle that the mothers go through or that their children also go through. This disease will take everything away from you. Relationships, time, time just to be to be yourself. It will take your work. It will take so much from you. So what you're doing is really really makes a difference. And I just want to call to action. I commend everything we have done. The different partners, Baylor, JCRC, Imara, each one of you, Ministry of Health. I really highly commend you.
But I just want to end by saying that it's not enough. It is not enough. We need to do to do more. And I call upon the top level government to get involved. So I'll end my call to action by requesting his excellency the president and a new speaker honorable both or both to take up this cause. We have been told that this is chisa no sleep. I really call upon the top leadership to make good on that so that we don't sleep on cell. We don't sleep on cell claiming more children that as it did claim mine so that we can be able to kick this disease out of our country.
I thank you and God bless you. Let's keep doing this. It matters. Thank you.
Okay, I keep asking you to clap for these people.
Thank you, Dr. Hope. At least is a message of hope.
She's saying she has lost her children, but she has not lost hope. So, we thank God for that. Thank you so much, doctor.
And without wasting any time colleagues, I'm running through the program. Uh people of entertainment don't think we have forgotten you, but we still have many speeches and we have to have all of them because most of these speak to the cleo cell disease. Allow me welcome uh Dr. Valu who's representing the busa kingdom.
Dr. Valu, may we put our hands together and welcome Dr. Andrew Valu with a big big round of applause.
Thank you so much for >> [clears throat] >> Protocol observed theme Building and strengthening cell communities is the family. We need to build strong families.
Fore is a family.
status.
status.
The cle cell condition genetics is not something that we didn't we we had in culture for a long time. We are learning to see how we communicate the genetics uh underlying cle cell transmission.
So I think we'll work very closely with the partners. We are very very happy [clears throat] for those partners especially who are coming to the region.
Um >> [clears throat] >> system.
Red Cross.
Red Cross.
accident blood bank.
[clears throat] Press conference to be as international day. Foreign Five and six.
forchech.
It touches our culture as an institution as institution that uh we need to dilute this gene and start early.
So thank you very much partners. Thank you very much, Ministry of Health, of course, people been working with for a long time on SEC cell uh both uh treatment um testing and of course [snorts] building [clears throat] building uh awareness in the community.
That will be about the biggest part we need to work on. We need to build awareness in the community and fight the stigma. It hasn't been talked about much scientifically but stigma will be a downfall because at one time uh when we went to schools the teachers said go and test for cocoa.
Coco is cancer and we had a lot of backlash. So stigma is something we need to fight. We don't have a particular name for the syndrome in this region and in many regions um a cultural name or local name. So we need to uh understand how we also teach the genetics trans uh and what sort of names we use around cell in vernacular.
Thank you very much.
Thank you, doctor. But honestly, such a clap can't be for a doctor.
The partners in the tent, can we hear you clapping?
Thank you. Thank you so much. Uh we just have we're going to have only one speech and then we have Masaka Warriors. I want you to prepare because you can't travel all the way from Masaka to Ginger and you go back without entertaining us. So you be ready after the speech I'm calling you'll come and entertain us.
And ladies and gentlemen, I want you to join me to welcome the RCC Ginger City who is none other than Mr. Valido.
Let's clap for him as he comes. This is the representative of the president.
So let's clap for him and give him all the respect because thank you so much.
Yeah. Thank you so much, Mistress of Ceremonies.
Our guest of honor who is standing in for the director general services minister of health.
My colleague, the assistant RCC Kalo, permit me to ride on the protocol already established.
But before I go further, permit me on a special note to recognize Dr. Susan Nabada just help me and give her an uplow.
You are now asking yourselves why I am alive because she's there. She knows what she did for me some 14 years ago and today the Lord said meet and remember her for that. Thank you so much. We praise the Lord.
Yeah. Ladies and gentlemen, on behalf of President's Office and the RCC, we welcome you here and we appreciate Minister of Health, Joint Research, Clinical Center and all partners in this struggle.
Sick cell as a disease is one of the neglected diseases but yet very harmful.
Many people look at it differently.
If I happen to speak in it is a myth.
have it together. They don't understand it.
So as we appreciate all those partners with the innovations that are coming up, bony marrow transplant, gene match, mention them.
I would and I am giving a wholeheartedly and a wonderful praise to the local manufacturer of RDT for that one will be helpful and will meet everybody's concern and everybody's need in the community.
This government was able to fight and combat HIV AIDS to a certain level because his excellency the president out of came out supported every initiative to fight it. The way we are fighting COVID, the way we are fighting Ebola.
Now we used to fear cancer and the day was declared that I have leukemia, I thought it was the end of the world.
But because of counseling and the presidency and uh all the organizations of Uganda Cancer Institute, I'm alive.
I therefore advocate for SEC cell disease institute the way it is with Uganda with cancer.
I advocate for massive screening the way we tackle these immunizable diseases in schools.
Minister of Health, may you please work upon it so that we get parents consent and each and every child is screened in schools so that we are able to talk to the people.
At times when I talk I have a wound on the heart and here I am thanking the warriors for the work done. We've seen it in our families.
You care for a child right from zero and when it comes to senior five senior six the child goes but having gone through the battles you can't tell. I therefore say it is better to know and work on it than just to keep quiet. Let us keep together. Let us work together. Let us sensitize our communities and let us have the mantle raised so that everybody knows one's status. This is the only way we shall move on. I conclude by thanking everybody and committing president's office with all the help within our reach to ensure we joyfully join and help to combat cle cell diseases using all the means that you the medics have brought to us. With those very many words, ladies and gentlemen, I once again thank you for holding this wonderful salient national arrangement or commemoration in Busoga. I don't know why you chose Busoga, but it could be we have the biggest number of cell clients.
Thank you so much for listening to me.
Paul Bidawa is my name standing in from the RCC. Ginger for God and my country.
>> Thank you.
Thank you so much Mr. Paul and for inspirational message. We appreciate you. Now we know that we are in the right place. We are speaking to the right people and we are being guided by the right minds. Thank you so much. Uh, massacre warriors, are we ready?
Are we ready?
Are we ready to entertain?
If we are, may we come to the stage or where they have gone for food. Hey, they are here. Let's clap for them as they come to the stage.
Maka warriors, can we move with energy, with vigor?
Thank you so much.
for association.
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Doctor, peace.
That's Afternoon everyone. My name is Nashima presenting a speech to you.
I distinguish the guest honorable leadership members of the medical facility and my fellow advocates. Good afternoon. I stand before you today not just to acknowledge on and inherited blood disorder but to amplify the voices of the millions of of warriors who who quietly battle scosa disease every day.
For too long this condition has been hidden behind stigma and silent struggles. Today I urge everyone especially our young people to take to to take the simple step of of getting tested and know and knowing your genotype.
Knowing your your medical comp compatib comp comfortibility before starting a family is our most powerful tool to prevent future generation from bearing this burden to our to our warriors living with cell your strength is miserable.
We are here to advocate for for better health care access early diagnosis and the comprehensive support for deserve.
Let's let us commit to breaking the stigma supporting one another and spreading the vual education needed to finally end the cycle of the disease.
Lastly, I would I would like to thank Dr. Adocus, Sister Grace and Sister Elder for being us for being there for us in the hospital.
Masaka Mago Regional Hospital. Thank you so much and and all the staff members who have been here with us who come with us. Thank you so much.
Thank you for listening.
Why are people not clapping?
Did we understand the subject of their play? Thank you so much. But also, Masaki warriors, may you, we want to thank you once again for that powerful performance. Uh, may you take up your seats. Thank you so much. May we clap for them as they go back to their seats.
Let's clap for the warriors.
But also, why are doctors always tough?
If I am the patient, I might just collapse because the doctor so much our colleagues at this very moment we were entering into the Ministry of Health speeches and this is the last this going to be the last from them at least we hear from the the the guest of honor and then we will go and at this very moment I want to welcome Dr. Charles so who's the commissioner non-communicable diseases at the ministry of health from Dr. Charles we hear from Dr. Susan Navada, the commissioner in charge of the National Health Laboratories and Diagonistic Center. May we clap for Dr. AO as he takes the podium. Thank you so much.
>> Yeah, thank you very much. The master of ceremonies, uh colleagues, our chief guest, before I begin, allow me do one simple thing just to request everybody to stand up. You have been seated for long. Just kindly stand up.
We have to stretch a bit please. Hey the students, the peas are not standing up. Please get up and >> students stand up.
>> Let us stretch a bit. Place to the right to the left up backward stretch.
Okay. The front.
All right. You can you may kick a little bit and you you know so that you stimulate blood flow.
All right. Thank you. Thank you. Thank you. Thank you very much. I've seen some people decided to just remain seated.
I don't know whether they got the instruction or not.
Our chief guest, let me write on the protocols that we already have.
I'm Dr. Charles O, the commissioner for NCD prevention and control at the ministry.
I did not come alone.
I came with a team.
Uh let me start with the team from the NCD department. Assistant Commissioner Dr. Gerald Muton can wave today. Thank you. Thank you very much. And the rest of the team from the NCD department if they are there.
We have NCD team from the laboratory department.
Where are you? Maybe Dr. is going to introduce you.
I don't see them.
All right. I think I will not take much time in that area. our chief guest. I'm very delighted today because we are talking about one of the non-communicable diseases or disease conditions that cannot be transmitted through close contact from person to person or through bites of insects, mosquitoes and all that.
But a disease that is linked to our inheritance, what we inherit from our parents.
Whereas other NCDS is linked to our lifestyles as individuals, this one is linked to the lifestyle in quote of the people who give rise to us or to the children.
So it is also lifestyle related and for that matter it is important that we are disciplined in the choices we make when we want to start a family. This one has already been said.
We have to be patient and we have to test and know our status.
Just like for other NCDs, it is also important that we are disciplined.
We test and we know our NCD status. Now when I talk about non-communicable diseases, colleagues, most of these disease conditions are silent killers.
They are silent killers.
If I turn to my left and also those in front and those on the right hand side, if you know you are 18 years and above, just kindly put up your hand. If you are 18 years and above there are those who are not putting up their hands. I don't know whether they want to rewind their age. But we have silent killers. The conditions that I'm going to mention here briefly they are on very high rise.
Number one, high blood pressure or hypertension.
We have heard about it. It is one of the NCDs.
One in every four of you seated here 18 years and above has high blood pressure.
It can kill without you noticing. It is a silent killer. Number two, diabetes.
As we age, the incidence also rises.
In Uganda, about three to four people out of 100 have diabetes.
The type that is linked to our lifestyles.
I will later on tell you what to do to avoid some of those. We have cancers, especially cancers of the cervix and cancers of the prostates for men.
We have chronic respiratory diseases like asthma among others.
We have respir I mean chronic kidney diseases, road traffic injuries. The rate of accidents is very high. All these are non-communicable diseases just like cle cell disease is hemophilia is and other inherited conditions.
Let us not forget about one important thing that came out here. Somebody talked about stigma.
You talked about stigma which is related to the mental health conditions.
So ladies and gentlemen, I'm very delighted that at least today we are all here and I would like you to join me to appreciate Dr. Miriam Ajambo the national coordinator for cle cell disease wherever she is. Dr. Miriam, thank you very much.
You have put more energies into cle cell disease fight. We thank you so much. But let me also appreciate the head of clinical department, Ginger Regional Referral Hospital. Where are you? Please stand up for recognition.
Thank you. Thank you. Thank you very much. That is the gentleman who work tirelessly with the rest of the team in the Ginger Regional Referral Hospital together with Dr. Miriam Majambo to make this day a colorful day. Let me also appreciate all our partners. I'm very delighted that today at least we are able to come together, put our voices together, put some resources together in the fight against cell disease. But in the spirit of integration, I want to request and also urge you that let us not ignore other important non-communicable diseases that equally affects children for example diabetes, we know type 1 diabetes and others.
So within the resources that we have, if we can integrate, that would make us go an extra mile in our fight against NCD.
I was looking around. I thought to my right on these tents, probably we have some missed opportunities to also screen for the rest of NCDs like measuring blood pressure, doing blood sugar test and others.
But for the start this is good. Next time we can do better.
Now colleagues what what is required of us because a day like this is a day that is important for us to pass some important information. We may not have it again and it would be an injustice to only come and talked about cle cell disease and we leave. I think as the department of NCD as a ministry probably will not have done you favor.
One, this is about prevention. Number one, let us change our lifestyles, the way we live, the way we eat. Be mindful of what you eat, the kind of foods you eat, should not be high in salt, should not be high in sugar content, should not contain a lot of fats, should contain more vegetables. You have to take foods that is rich in fruits as well. These are very important for you to be healthy. Number two, you should be physically active. Do not remain seated for more than 2 hours without standing up or stretching around. We do recommend physical activity or some exercise that is within your means within your capacity at least 30 minutes every day 5 days a week a total of 150 minutes minimum in a week for children this can extend beyond that. Number three let us reduce on consumption of alcohol.
Alcohol. Yes, alcohol we reduce or we avoid completely use of tobacco and related products. These are very harmful substances and we have to ensure that our children the young ones are fully vaccinated against preventable diseases. Now from my angle of NCDS we have hepatitis B which is preventable through vaccination.
We have human papilloma virus which is preventable through vaccinations and we give this to girls 10 years of age.
So colleagues other things I will leave it for now because of time constraints and I would like to appeal to institutions of learning especially teachers please take good care of children living with cle cell disease. and other chronic diseases.
When it comes to uniform, they should be given special care, special conditions.
We can't treat them like any other ordinary children.
Where children wear shorts, probably they may need like trousers and warm clothing to ensure that we control temperature extremes. They need adequate water. They should be allowed to carry something and other food stuff that would boost their energy.
And we have to minimize stigma as has already been mentioned the right we can work out our gu of honor probably with ministry of education like UNEP during examination time. These children really suffer a lot. Some do not even sit for their exams and this is injustice and may not be good.
My appeal to our partners please within package of essential NCDA interventions what we call pen plus SQL cell disease is one of them. So wherever we are working please let us provide the services as a package with support of course of our public facilities.
Number two to everybody multis sectoral response is very important. We say don't leave out don't leave behind anybody. The whole of society the whole of uh government all of us are in this together. So let us put our hands together to address the rising burden of NCDS in this country. I thank you so much and I wish you a very very happy stay here and a successful journey back later on. So at this juncture I would like to no clap for me. Ladies and gentlemen, you are so mean.
Let us not be so mean.
Those in this tent on the right hand side, please, you are making noise.
Are you listening to us?
The tent on the right, the immediate right.
Somebody has to remind them they are not paying attention. So at this juncture allow me take this opportunity to request my fellow colleague my fellow commissioner rather uh Dr. Susan Nabada if he's there. Yes Dr. Susan, you're most welcome. Our guest of honor, we work very closely.
This just to inform you, Commissioner Lab, the lab department and other departments in the ministry.
We are very very we are a solid team in the fight against NCD. Thank you very much. I wish you all the best. Dr. >> Yes.
>> Our chief guest, uh, Dr. Daniel Chay standing in for the director general.
All protocol observed, but allow me today to ask the special warriors who are here to stand up and we officially welcome them on this day. This is their day. Our special warriors, can you please stand up and we recognize you? This is your day.
As you've already heard, I'm Dr. Suzanne. I'm the commissioner in charge of laboratory and diagnostic services at the Ministry of Health. I stand here to let you know that all this that we are doing can't go on without knowing your status.
And the entry to know this is by testing.
So I'm I'm here to let you know that as the ministry and as the country we are we are capable of providing you with all the necessary requirements that we need for diagnostics right from newborn screening the screening that we do for adolesence and for the patients not only for screening but also confirmation but at the same time to help you monitor the disease if you've been uh diagnosed with cle cell disease. We have the capacity across the country right from the reference laboratories up to the community health structures and that's what you have currently been seeing in this pre uh commemoration activities where we've gone to the communities to test. So I'm here to give you uh assurance that we have the capacity to continue doing the newborn screening, the capacity to continue monitoring you and what we are using is of quality.
So please be assured of what we are using. Allow me to thank our partners that have come into support in the diagnostics using our locally manufactured kit. As the department, we are here to assure you that this kit is was well validated and is of quality.
So, whoever is using it, use it with one heart. We've heard that it might not be of quality because it's locally manufactured. Some of you want to still use kids from out. We shall continue getting our partners supporting us with kits from out. But our kit here is quality assured and I'm here to assure you. So as the department of diagnostics uh we are here to commit that we shall continue to support this cause to make sure that no one is left behind without knowing their status. So thank you all for coming on this uh special day as we commemorate our the world cell day and we pray that all of you as you leave here you are ambassadors and take on the message of advocating for everyone to know their status. Thank you so much and I want to wish you u the remaining of the time a very good deliberations as we currently now want to welcome we want to welcome our special guest our chief guest for today Dr. Daniel Chavins to come and speak to us on this special day as we commemorate the world cell day. So director you are welcome to this. Thank you so much.
>> Thank you commissioner Oo and Dr. Susan Nada Dr. Dr. Daniel Shawines, you're welcome to speak to us. And colleagues, the the director public health is also going to officially launch the Imara project and the task forces. So the launch materials should be ready when he's done with his speech. He's going to officially launch the IMRA project and the task forces.
Thank you so much, doctor. You're welcome to speak to us.
our distinguished guests, the warriors, the honorable minister of health, Busoga Kingdom, Dr. Andrew Balku, the district and city leadership representatives here, the chairperson, national cell task force, national coordinator, representative of Ginger city, representative of Ginger regional referral hospital, representatives of the implementing and development partner and the list is long.
Joint Research, JCRC, Emara Program, Terino Corporate, Raise Hope Foundation, Baylor Foundation Uganda and the World Health Organization, PAL Bank, Representative of Patient Advocacy Groups, CEO Alliance of Uganda, Uganda Students Association, the Secell Warriors, Ginger and Massacre, and other parts who've come here today, religious and cultural leaders, health workers, clinicians, members of the fourth estate. Ladies and gentlemen, good afternoon.
I am speaking at a time when we've had a chance to listen to many other people. I bring you greetings from Dr. Charles Olaro, Professor Olo, the director general health services and also from our leadership the ministers and you know that now they in Changans they unable to join us but I'm sure they would have been here but they are now in a retreat so allow me to give the speech on their behalf.
I am honored to join you on this day, the world secelen national commemoration. A day that calls every Ugandan, every leader and every partner to account.
We gather here not to simply mark a day on the calendar, but to confront a disease which I also want to say is a condition that has long exerted a devastating role on on our children, our families and our communities.
I am proud that we are all here in Ginger, the heart of Busoga, a sub region that has warmly embraced this commemoration day itself and is at the center of Uganda cell's burden. I thank the city administration and the local government, the leadership of Busoga Kingdom for their hospitality and partnership and they have made this gathering to happen and make it possible.
I also note that we convene today under the current outbreak of Ebola, which I'm gladly saying that we are beginning to see relief and continually to have it under control because we've not had any new cases in the last 13 days.
So, we want to ask you to continue observing the protocols as you are guided.
This is also a reminder that our health systems must be simultaneously alert for multiple outbreaks and threats. I commend the organizers and the leadership of the national coordination silos cell disease program for ensuring that safety is paramount even as we celebrate and mark this day. You have done an outstanding job. Thank you.
Now I allow me to talk about the people we need to commemorate and appreciate today.
I wish to recognize the exceptional work that has brought this event to bear under the dedicated leadership of the national coordinator sale program Dr. Miriam Majambo, we clap for you and all the partners.
A remarkable pre commemoration efforts where you have done screening of over 1,000 people to this day. We also want to recognize JCRC and Imara program.
Thank you for the technical leadership and the resource resources deployed during the outbreak uh the outreach. We also want to recognize to remote corporation for your support for testing equipment.
We want to recognize raise raising hope foundation your grassroot energy and the community presence that continues to inspire others. We want to recognize Baylor Foundation for the support with hydroxya and the financial support towards this commemoration event. We want to recognize and thank Microhem Scientific, Nikosam, MJAP and all the implementing partners in the district. The list is long, but I'll think I'll take time and go through it.
We want to recognize Ginger Regional Referral Hospital and all the districts that have teamed up here and also to thank Ginger Regional Referral for giving Martha a wheelchair. I hope it's on the way.
We also want to recognize CEO Alliance of Uganda Warriors and the Uganda Students Association. Your advocacy and lived experience have been the moral engine to the entire effort.
To each and everyone here, the Ministry of Health is very grateful. Your work over the past weeks has not only gathered and generated vital information, it has provided us an opportunity for early diagnostics, linkage to care and for those with the trait genetic counseling and inform about your reproductive choices. Allow me to add this. You do not have to test every time they call for testing.
Once you know your results, I don't think you have to keep coming and retesting.
I think that message needs to be made since it's a genetic condition is not going to change by the number of times you are going to test.
This is what the testing has revealed.
The results from pre commemoration screening activities in Busoga are both instructive and urgent approximately and you've had 2.2% 2% of those who tested were found to have the cle cell disease and approximately every one in four people were found to carry the disease trait.
That is a 25%.
With some districts recording a higher prevalence of of the illness or the condition.
These are not abstract numbers and you had the real numbers being read. They tell us that some communities in Busoga nearly one in four person carries that gene and that in combination with other carrier results in their childhood with fullborn cle cell disease. This is the epidemiological reality that we have confronted with and it means that one thing is clear the sensitization and testing we have to conduct in preparation for today must not stop when the program ends. Today is the beginning, not a conclusion.
We must carry the outreaches beyond the commemoration into every health center into every school, every place of worship and every household in this sub region and beyond. I therefore call upon the local governments district city administration and all partners to sustain the community level of awareness, testing and linkaging to care as a routine health service, not a one-off event, but a permanent feature of how we can deliver health services in the region. Everyone who is pos tests positive today for the trait must receive informed counseling on reproductive choices.
Every child identified with a disease must be linked to care before complications develop. This is the only acceptable standard.
Uganda has one of the highest burdens of cle cell disease in the world. cle cell traits affects between 13 and 15% of our population. Each year approximately 20 children are born with cle cell disease and between 6,000 and 9,000 die before they attain the 5 years most of who is informally diagnosed.
This disease as we've heard is preventable. That is the assessment that the fact that we need to commemorate this day and we have to say preventable disease demand a preventable response.
Allow me to highlight the progress and milestones as of today. All the people who spoke today have already made the mark. Fellow Ugandans, we are not here aware.
We have moved a long journey in the last 5 years. The fight against cell disease has moved from the margins of the center of our national health agenda. I am pleased to report the following milestones.
Nationalwide mandatory newborn screening. In February 2026, Uganda launched a national mandatory newborn screening program. Every child born in Uganda in the public and private sector, we must be tested at birth through the local development which is BU program.
Uganda is now producing its own rapid diagnostic kits. The point of care machines are also available in all our regional referral hospitals and some selected general hospitals for qual with quality assured test and now we are doing quality assurance and monitoring of these care tests. Early diagnosis means interventions and early interventions save lives. Hydroxya is available and procured by government and distributed in the facilities with the recent launch of the production of local manufacturing of hydroxyura by quality chemical industries. This disease modifying medicine reduces pain crisises, decreases hospital admissions and lowers transfusion requirements. All children confirmed with cle cell disease are now commencing on hydroxile as early as 9 months of age. It has been added to the national essential medicines list distribution to the lower health facilities and is also this is underway.
In terms of clinical milestones, Uganda can now offer automated red blood cell exchange for SEC cell patient at JCRC and the Uganda Cancer Institute. Earlier this year, Uganda recorded its firstborn marrow transplant in a cancer patient, a potential cure for cle cell disease.
JCRC is also making steady progress towards a gene therapy.
Now let's talk about decentralizing the care. We are expanding cell care in health centers for across the country.
Cell disease care has been integrated into chronic care clinics and guidelines are being revised and the health workers will be trained.
Cell care is can be accessed at lower level where patients live not only at the national referral hospitals.
Uganda also launched the national task force and I wanted professor Chiguri to say something but maybe because of time I'll mesh K that she's leading us very well. The national task force formed in some regions today will formally launched the four regional actions task forces religious students districts and culture leaders. Government alone cannot win this fight. Every sector of the society must be mobilized and these task forces represent our commitment to the broad ownership.
We have also talked about the Imara program a new model partnership. Among the partnerships that fill me with the greatest hope is the Imara framework which officially launched we are officially launching today. Imara means resilience and firmness in Swahili is supported by the Turmo bloods and cell technologies and the world collashion for cleo cell disease and also in partnership with JCRC.
It represents a model of collaboration that moves beyond short-term interventions to build a lasting health system of change. Ginger city has been selected as a pilot sat and the Imara comprehensive care pathway and it has no and this is not by coincidence that Ginger has been selected.
the data from the regional from this sub region and the existing clinical infrastructure and ginger referral hospital and the community commitment demonstrates demonstrated during our pre-commoration activities make ginger an ideal site to prove that it's possible for all Ugandans. I want to conclude by making some call for actions.
I wish to reinstate that the ministry of health calls on stakeholders as we have previously issued press releases ahead of this commission. I'll say to the implementing partners, expand beyond the Busoga region to provide care everywhere. To the legislators and the culture leaders, you need to be championing uh championing primal cell testing and genetic counseling for all.
To the district leadership to drive the sustainability of cle cell awareness and to the health facilities to formally integrate cle cell care into chronic care. And finally to the different patient groups and families, we hear you. Your resilience inspire us. Your advocacy drives our commitment. Continue to speak out to support one another. And the finally to the media. You are the source and our mode of communication.
Continue to inform, educate, and hold us accountable. Accurate reporting on cle cell saves lives and will help us kill the stigma. Finally, in conclusion, this cle cell day, world day is a day to reflect on the lives lost, on the lives being lived with exonerate courage and the lives that we have to save through our collective efforts and actions. The screening results in Busoga are a mirror held up for us that shows us that scaling up testing and coming up and showing the challenges and they compel us not to look away. The testing must continue.
The counseling must continue as well.
The linkage to care must continue. It must continue the long after the program ends. Ladies and gentlemen, let us leave this place with one clear resolution. We are all resolved to do more, to do better, and to do it together. The fight against cell disease is a fight that the soul of the nation. And with the commitment I see in this gathering today, I am confident we will win it.
one child, one family, one commitment, one community at a time for God and my country. God bless you and thank you for attending.
As I mentioned earlier, I wanted to go through the list of people we wanted to recognize and I know there are going to be some special recognitions but allow me just to conclude by recognizing the top leadership of Ministry of Health, the commissioners, the clinical services, non-communicable diseases, health departments, Mago National Referral, Mccera University, Uganda Pediatric Association, Ginger Regional Referral, Nalofenia Children's Hospital, District Local Government, Religious leaders. We also want to recognize the development partners. Baylor College of Medicine, Children's Foundation, Raising Hope International, Uganda Cell Rescue Foundation, Quality Chemicals Industry, Tormo Blood and Cell Trans Technologies, Emarra Program, JCRC, SACO, Uganda Cell Panaffrica Research Consortium, Chai Clinton Health Foundation, Human Diagnostics, Microhem, Nikosum, UPB, Uganda Proetance Medical Bureau, Orocure, MJAP, Biomedics, SECell Alliance, Busoga Health Forum, Secosell Students Association, Katherine Fields, SECell Support Initiative, other implementing partners. I also want to recognize the local government and culture leaders, Busoga Kingdom Leadership, Ginger Local Government, Ginger City Administration, Ginger Ianga General Hospital, Camolei Hospital, Ginger Regional Faroh. Then I want also to recognize the private sector. PAL Bank who are not necessarily we need to club for PAL bank. We recognize your support. Baba TV and radio NBS bridge FM city FM I radio. And finally I want to thank the exhibitors who are here. Jierc Toro Corporation I think they are the same people I've already recognized. Thank you very much and God bless you.
>> Thank you so much Dr. Dan. and also we clap for him for recognizing each and everybody. Is there anyone who's not mentioned? Thank you so much Dr. Doctor at this very moment allow me invite uh uh Dr. Professor Professor Chiguli to join you as you take into you start the process of launching that first the task forces and uh second the imm project and third we have some breaks uh recognizing some people that we would request you to also hand over professor Sarah Chiguli Dr. Valu the RCC Ginger City uh the regional referral hospital director Dr. Alfred Yay, may you kindly join the guest of honor to launch to take on to the process of launching the task forces.
Dr. Mal >> representative from the cultural the cultural Dr. is already here.
May we join the director dire the director the the launch banners are here the markers okay representative from just one person to just explain this to doctor and then he okay okay okay okay doctor is going to each one of us is going to sign give.
Okay. Okay.
May we we can start the signing.
Muslims secel task force that the guest of honor is now launching the Muslims cells task force. Thank you so much director.
And then next is thea regional students sales task force. It has also been launched.
Okay. Thank you so much doctor.
Busoga regional student task force has officially been launched.
We want to thank them and next is Busoga Kingdom cell task force.
It is being launched next the rest of the team you can join into the sign. The it religious councing process. Thank you.
The secondary school teachers take sales task force has also been officially launched.
Thank you so much.
Catholic sec cells task force and members all these are regional task forces.
We want to thank you so much.
And next is the national fellowship of born again cell task force.
Thank you so much.
Thank you. Thank you so much doctor and the team.
The interre council has also joined members. Let's append our signatures.
These task forces want to see our signatures. That is when they will know that they the the task forces have been launched. The students association representative The student association representative should also come and participate in the launch. The seventh day SEO sales task force has also been officially launched.
The students association.
Thank you. Thank you so much. So colleagues of the task forces may you put away the banners and then we give chance to Imara project to put to put their launch board and then we have it launched. Imara project where are they? Okay. Ah these ones are very strategic.
The imra representative to give you a microphone.
You exactly explain what this is to the doctor.
Okay colleagues, let the banners stay after we are going to have a b a group picture there. The project representative.
Hello. Good afternoon.
Good afternoon again. So my name is uh Dr. Nathan Mulur. I work for Terumo. I'm also the head of policy and programs. So the MA project was conceptualized two years ago as a multi-country framework targeting Uganda, Kenya and Ivory Coast and we put together a task force that in Uganda was led by Dr. Munji who was the head of the advisory board. He able led us for two years and delivered the MARA framework in Uganda. uh today framework is under the JCRC opices and our chair Dr. Sally right here he's also leading the IMA program in Uganda we also have the MA program officer Francis and also Samuel uh that's the team that is now leading IMAR of course under the chairmanship and leadership of of Dr. DC who is the executive director. So MA framework basically is a framework of a comprehensive care path for cle cell disease to avoid the many fragmentations that we have in the cle cell program.
This basically coaleses all partners together right from screening early diagnosis treatment linkage to care advanced blood transfusions and all the way to bone marrow and eventually gene therapy. So we're really happy to have this framework launched in Uganda because we believe it will bring all partners together for the good of the cell patients in this country. We've all seen how the suffering is deep, how they were crying and uh I was actually moved to tears but I want to thank all of you for this support and I think from today uh based on what you're going to put in place uh we'll see a difference in the IMAR program. Also I'd like to see all the members of the advisory board who are here uh just to have yourselves recognized artboard adboard members thank you very much for your support. So we will uh ask our chief guest to take a pen and uh sign commitment to support the MA framework in Uganda. We believe this framework is what Uganda needs to turn the tide of cle cell disease in this country. Uh also JCRC will follow and uh Terumo will follow by Eric and uh Michael Commissioner Labs will follow. Sorry. Uh Dr. Cece is still here. She had promised to hang around as much as possible.
Uh so in her absence Dr. Sally will sign um Dr. Charles Oo is there professor Sara Chiguli also the will follow suit the head of the religious organizations will follow suit director ginger referral Dr. Alfred Alfred you will follow suit. Uh of course Miriam Jambo who has a led us in all these preparations uh will also be there. This commitment basically promises ourselves to put all efforts necessary to ensure that cle cell patients lives are better. those that who are diagnosed early able to live a long life and even avert things like the cle cell crisis and hip replacement uh issues.
Uh not forgetting raising hope and cle cell alliance uh please be on the queue. We want to emphasize that patient organizations are critical in ensuring there is enough information at the grassroots for people to take care of themselves.
Involve self-efficacy and also avoid the crisis because each crisis is pain and each pain means organ damage and each organ damage means shortening of lives and this can all be averted and avoided.
So adboard members don't forget to sign Dr. Dr. Dio you'll be able to sign as well.
Uh the JCRC team Dr. Munji should be having a pen by now.
Yeah, this is all your good work that you have uh tirelessly worked for the last two years and want to really appreciate you and thank you. So we are here to stay commitment to stay to work with you for the longest hall until this disease called cell becomes a rare disease isn't it? It until it becomes a rare disease.
So please pen your commitments.
Uh Michael, you can pen your commitment.
No escaping today. [laughter] And all of us to really uh thank uh your partnerships and Terumo is here to stay also with you. We give our commitment as a leading blood and cell tech company to support efforts that are going to improve the lives of cle cell patients in this country including advanced blood transfusions and also supporting the bone marrow unit that is coming up and eventually supporting the gene therapy.
Thank you very much >> colleagues. Let's clap for Imara. Thank you so much for that thorough explanation. Uh guest of honor and team, we want to request you uh go uh go back to the podium. So we have uh then after let's first finish giving out the plex and then we take the photos at once.
Thank you so much.
The Imara board can now be extended this side and then the can now move behind and then the signing continues. Thank you so much. Imara Dr. Jambo I want you to take over the session of awarding plates.
Thank you as we take away the board for Imara. We are we we we shall come back and take the photo. Let's just get done with the guest of honors responsibilities here so that we can take photos at once. Okay.
So um like I mentioned earlier, we've been doing pre-commemoration activities and we have tested uh over one 10,000 um people within the sub region. So we are recognizing the districts and individuals that have put in so much effort to ensure that this happens and like I mentioned um Eanga takes lead in this um in this pre-commemoration effort. Eanga district wherever you are. You tested over 8,000 uh people. Please come over and take your your your your plangar run as we get ginger city getting closer. You tested over 4,000 people and I'm going to follow up this recognition because you have to keep up the standard. Yes. Yes. Yes. So we have the Ganga district lab focal person there and a sec cell focal person for Eanga General Hospital. They have done a great job. Well done.
Well done. Well done. Ginger city. I know the plaque reads Ginger District.
We are going to correct that. It's Ginger City. Ginger city. Are you here?
Whoever is from Ginger city, the RCC can receive for for the for the city, they are our hosts and um Yes. Uhhuh. Even even the regional referral. Yes. Yes.
The regional referral. Yes. Uhhuh.
So it's supposed to be Ginger City. We will surely correct that. Well done, Ginger City. And then we have Vui the great VUI Vari are you here? Vui district. Vuari district come running.
Camolei Camolei district.
Bugary district. Yes please.
Camolei district. You should be getting closer. Do we have Camoi district here?
And then for the plex we will end with Kalo.
There is Namuta. Yes. Kal and Namuta. So do we have >> Kalo?
Okay. Are you here? Cami is not here.
Okay. Let someone come and receive for Cami.
Nobody.
Oh, you receive for kami m. Let mjap receive. They support the entire region.
So yes and mjap has done a great job mobilizing with us. So yes. Um so we go to kalo.
Calo district.
Kalo district. Yes. Yes. Well done. Well done. I'm following up those flex to keep up that uh standard. Namuta Namuta Namuta district Namumba district are you there who is receiving for Namuta okay yes you're in Namutumba yes so you receive for Namuta the plague is there okay then we'll go to certificates we'll go to individual certificates individual certificates Um, Natalia Aisha, Natalia Aisha, Nasali, Sharifa, some of these are students who have been helping us to test in the schools.
Nancha Hanifa, hurry up. When you hear your name, just come quickly to your Okay, you went to eat.
Okay, now I just want to recognize uh those that are here. Let me just sort them.
They are like Yes, you can. Dr. Revol from um from MJP. Dr. Revol from MJAP.
Okay.
Dr. Antaly Idris.
Dr. Antaly Idris. Yes. Dr. Antal Idris.
Dr. Antal Idris.
Dr. Kanye Francis. JCRC.
Woo.
JC Dr. Kanye.
Dr. Mo Ginger Regional Referral Hospital.
Someone from Mjab come and receive for Dr. Leola Dr. K Samuel JC Samuel JC Dr. Paul Revol she's receiving for Dr. Paul Revol Mr. Oello Isaac raising hope.
Oello Isaac raising hope. Mr. Vani Molinda Ministry of Health.
Miss Freedan Cero, National Labs. Vienn is around Mr. Vani Molinda.
Miss Freedan Cero. Mr. Miss Freda is here [laughter] district you will find your certificate with us Patrick Dhanga district ganga district um then we have a baka no dhui district I am just going to read them then we will give them their certificates because They are not here. Miss Sharifa, you're here. Come for your certificate.
The de Okay. Miss Chifa, come for your certificate. She's the one from Eganga.
Eanga General Hospital.
Okay. Then the outstanding testing performance. Mr. Ramadan Yasin.
Mr. Ramadan Yasin.
Where are you? come for your outstanding performance certificate.
He has done a great job. He's my foot soldier.
Mr. Ramadan Yasin, I know that you are all over the place. You are ensuring that this function ends well. Yes, but you should come when you're ready. Yes, Mariam Nal.
Yes, this is the last one. Mariam Nantal is here.
She she is the district lab focal person of of of Ganga. So the rest you find your certificates with us.
Yes.
Well done. We appreciate every effort and we will follow up to see that you maintain that. Thank you so much guest of honor. Thank you so much. Let's go into the group photos now.
First here, another one there. Another one here.
Three photos are enough. The key people that have been signing the boards are the key people. You're going to be joined by the technical teams.
Dr. Dan, you can lead the team.
Okay. Okay. Okay.
Colleagues, this this this podium is big. I would like technical teams to join in behind. You take that shot first.
And then our partners, our partners, we request to you to join into the big group photo.
our partners, religious leaders, religious leaders present, Ministry of Health officials, Ministry of Health officials. Isn't this picture big? Kindly come and come this side or on or in front from the lady in blue.
Okay.
Okay.
Photographers, is that picture coming out where from the sheck? Yes. Yes. from the sheet.
Photographer, if you're done, you let us know. Also, let's put up smiles.
Okay.
Dr. Dan is smiling. Dr. Nad is smiling.
Professor is smiling.
Okay.
Thank you.
Are we okay now? Oh, this is all any other picture.
this one.
Let's go now to the to the to the banners.
They want to see those banners. But the just only Dr. Dan and the team can take pictures on those banners.
We need to extend here. Uhhuh. Exactly.
Reverend, kindly come this side so that the picture is not bent on one side.
Okay, Dr. Net. Exactly.
This side.
No, no, no. You this side. Exactly.
Okay.
Is that fine?
I think that is okay. Any other pictures?
Okay, the team you can join into that picture led by Dr. Dan.
I think I should also be joining to that one. I'm putting on a cape, honestly.
Thank you colleagues after here this taking pictures is our last activity but don't forget we had prepared lunch so let people not leave food also the media team if you want interviews from the doctor this is the time also those who got certificates those that are not signed kindly bring them back to doctor to sign them before he goes he has offered the media for interviews if you And this is the time and the band. If you can prepare, if you can prepare, we have the anthems and close this ceremony.
The band the band left. We shall sing.
We shall stand up and sing by ourselves.
Can anyone lead us into the anthems and we close the ceremony? When you open with anthems, you close with anthems.
Anyone to lead us into the anthems in reverse order. Meanwhile, one stanza each.
Okay.
There's Yeah.
very >> Thank you very much. the anthem.
Okay.
Let's join in the words of the grace.
May the grace of our Lord Jesus Christ and the love of God and the fellowship of the Holy Spirit be with us all now and forever. Amen.
>> Thank you.
Whatever.
They are not signed.
Our guests, can you please bring the food for the guests?
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