The launch of the Africa CDC Continental Plan for Sickle Cell Disease (SCD) and other inherited blood disorders is a historic turning point in the fight against one of the continent’s most overlooked public health challenges.
“Very often, we meet families who only find out about Sickle Cell Disease(SCD) after one or more of their children have already suffered a severe crisis. In some cases, it’s too late for prevention, only management. That is why this continental plan matters to us, because it strengthens the exact points where we have seen families fall through the system,” remarked Nawasswa Martha , Team Lead of Know Your Type, at Raremark Foundation.
For decades, SCD has remained one of the most under-discussed public health challenges across Africa despite the enormous emotional, social, and economic burden it places on millions of communities every single day.
While global health financing transformed outcomes for diseases such as HIV/AIDS, many communities affected by SCD continued to navigate painful realities with limited access to treatment and psychosocial support, while many unaffected communities still lack affordable screening services and accurate awareness about the condition.
“It’s not just the medical support gap, but the emotional weight families carry when they realize earlier screening could have changed everything,” adds Nawasswa Martha
Through our screening, awareness, advocacy, and community engagement programs, Raremark Foundation has directly interacted with hundreds of different communities navigating the daily realities of SCD. We have screened and educated over 700+ individuals about the disease, funded life-changing hip replacement surgeries for Sickle Cell Warriors, and built community-centered programs that connect these communities to care and support, largely without government support.
These experiences have taught us one critical truth: Awareness alone is not enough.
The communities affected need affordable and accessible treatment. They need psychosocial support systems, early diagnosis, stronger healthcare structures, community understanding, and policies that move beyond conversations into implementation. This is why the commitments being advanced through the Africa CDC Continental Plan represent such a major breakthrough for the SCD community.
Africa CDC’s new focus on improving access to Hydroxyurea through public health systems, strengthening newborn screening, advancing premarital counseling, increasing community awareness, improving prevention efforts, and prioritizing public education has the potential to significantly transform outcomes for millions of communities across Africa if effectively implemented and sustained.
“When I was first diagnosed, I didn’t understand why pain came and went without warning. I’ve spent years learning my own triggers, managing crises, and watching how expensive it is just to stay stable. So when I hear about newborn screening and easier access to Hydroxyurea, I hear a chance for a child to understand their condition earlier than I ever did, and maybe avoid the years of confusion, fear, and preventable pain I went through.” – Limaro Lynn, Sickle Cell Warrior
We applaud Africa CDC, and all stakeholders championing these important conversations and commitments. But this moment also demands collaboration.
For years, NGOs, advocates, and community organizations have carried much of this work with limited support and resources. Now, there is an opportunity to build something stronger through meaningful collaboration between the Ministry of Health – Uganda, and grassroots organizations already working directly within the affected communities.
We hope this marks the beginning of long-term action rather than short-term attention. Raremark Foundation remains ready to collaborate, and contribute towards ensuring these continental commitments become real and measurable change within our communities. We believe that no family should have to bring a child with SCD into the world or fight the condition alone simply because the systems around them failed to act in time.
ABOUT RAREMARK FOUNDATION
Raremark Foundation is a community-driven organization dedicated to promoting awareness and early detection of Sickle Cell Disease (SCD) within communities, while improving access to both medical and psychosocial care for Sickle Cell Warriors. Through its programs, the Foundation works to bridge gaps in healthcare access and strengthen support systems for affected individuals and families.
For partnerships and inquiries:
Email: admin@raremarkfoundation.org
Phone: +256 791 246663
