A non-profit organization dedicated to improving the lives of people living with(Warriors) or affected by Sickle Cell Disease. Founded in 2020, it has always been guided by one core aim: creating a safe space where Warriors and their families can exchange information, support one another, and raise awareness about the condition.
Today, through targeted programs and support from partners, Raremark Foundation has evolved into a structured organization driving awareness, care, and advocacy for individuals and families affected by SCD.
Our community is made up of Warriors, caregivers, healthcare professionals, and advocates, all united by a shared passion to create a better future and work toward a generation free from Sickle Cell Disease.
Founded in 2020 by the late Josephine Esisa Madewo, together with Steven Byamugisha and Don Magezi, Raremark Foundation was built by Sickle Cell Warriors, for Sickle Cell Warriors. It began as S for Sickle Cell, a grassroots initiative focused on raising awareness and education around Sickle Cell Disease (SCD).
What started as a community effort has grown into a non-profit organization with a clear purpose: creating a safe space where Sickle Cell Warriors and their families can share information, support one another, and deepen understanding of the condition.
We exist to improve the quality of life for Warriors by building an informed and supportive community.
Through education, advocacy, and access to care, we empower Warriors and their families with the knowledge, resources, and support they need to take control of their health and live better lives, strengthening the fight against SCD together.
To become Uganda’s most trusted and impactful Sickle Cell Disease organization, a beacon of hope, and strength for every Warrior and their family.
We are committed to ensuring that every Warrior has access to the best possible care and support, while driving awareness and understanding to eliminate stigma and discrimination within the broader community.
The Kampala facility will serve as the Foundation’s primary Center of Excellence, operating three complementary wings to ensure mission impact and financial sustainability.
NATIONAL REACH
5 Specialized Facilities established across key regions of Uganda (Kampala plus 4 satellite centers).
CENTRAL HUB
Establish the Raremark Specialist Teaching Hospital in Kampala.
CAPACITY BUILDING
Train and deploy 200+ specialized health workers capable of managing rare conditions.
RESEARCH IMPACT
Launch 3-5 significant, Uganda-specific research initiatives on rare disease management and treatment efficacy.
01.
Function: Provides affordable, high-quality general inpatient and outpatient care for the general public.
02.
Purpose: This wing provides essential, high-volume general care, enabling the integrated operation of the specialized treatment, teaching, and research wings.
01.
Function: Dedicated laboratory and clinical research space focused on studying the unique presentation and management challenges of rare diseases within the Ugandan population.
02.
Purpose: To contribute globally relevant data, inform better local treatment protocols, and attract international research partnerships and grants.
01.
Function: A dedicated teaching facility offering specialized clinical rotations, certificate programs, and advanced training in the management of rare condi- tions (starting with SCD).
02.
Purpose: To train the next generation of physicians, nurses, and allied health workers. This essential service builds specialized expertise and combats the national shortage of specialized health workers.
The ultimate goal is to translate the expertise gained in Kampala into tangible results nationwide.
01.
Train the Best: Specialized health workers are trained extensively at the Kampala Teaching Wing on the latest evidence-based management of rare diseases.
02.
Deploy Nationwide: Once fully trained, these professionals are deployed to the four satellite Raremark facilities established across Uganda.
03.
Local Expertise: This strategy ensures that high-level expertise is decentralized, providing accessible, quality care for complex and rare conditions to commu- nities that currently lack it.
Co-Founder of The Raremark Foundation & Co-Founder at Digimark communications
You were such a light and cheer, a ray of hope to many. Because of you, many have embraced Sickle Cell disease and learned to live with it, many others learned a thing or two about it.
Your legacy will carry on. May you rest in eternal peace, Josephine Esisa.
Steven Byamugisha
Cofounder Operations & Programs Lead
Don Magezi
Cofounder Community Lead
Benjamin Madewo
Director
Angella Nambooze
Care & Treatment Patient Support
Martha
Education & Awareness Lead
Sheila Pimungu
Communications Coordinator
Wilma Pouline
Podcast Co-Host / Volunteer
Ivan kakulu
Finance Manager
Dr. Geoffrey Madewo
Chairman
Surgeon/consultant
Ada Mugenyi
Secretary
Business owner
Don Magezi
Board member
Co-Founder
Benjamin Madewo
Board member
Industrial engineer/Technician
Steven Byamugisha
Board member
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