The Fanconi Cancer Foundation is proud to partner with organizations around the world that are working to improve awareness, care, and support for people living with rare diseases, including Fanconi anemia. One of these partners, the Ivan & Joan Foundation, based in Tanzania, continues to advance important advocacy efforts in its country through leadership and community engagement.
Recently, Winlady Boniface, founder of the Ivan & Joan Foundation, was invited to serve as a panelist at a national rare diseases symposium. The event brought together representatives from key government departments, health leaders, and advocates to discuss challenges and opportunities in rare disease care. Dr. Grace Magembe, Chief Medical Officer at the Ministry of Health, served as the guest of honor.
During the symposium, Winlady spoke on behalf of families of children living with rare diseases and highlighted several critical challenges affecting access to care:
- Delayed diagnosis of rare diseases
- Limited availability of orphan drugs
- Lack of health insurance coverage for costly treatments, including bone marrow transplants
- The absence of a dedicated unit within the Ministry of Health that provides accurate information about rare disease treatment
In response to these challenges, she presented several recommendations aimed at strengthening national support for rare disease communities:
- Establish a national rare disease database
- Create a specialized Center of Excellence for rare diseases to provide diagnostic tools, access to orphan drugs, and psychosocial support
- Include provisions for rare diseases within health insurance policies so that a portion of treatment costs, such as 50 percent, can be covered
- Develop a dedicated rare disease department within the Ministry of Health
- Integrate rare diseases into national health strategic plans
The symposium created an important opportunity for dialogue with government leaders and decision makers. According to Winlady, the discussions were productive, and officials from key departments responded to the issues raised and committed to exploring potential solutions.
Advocacy efforts like these play an essential role in building stronger systems of care for rare diseases. By elevating the experiences of families and engaging policymakers, organizations such as the Ivan & Joan Foundation are helping move rare disease awareness and care forward in their communities.
The Fanconi Cancer Foundation is honored to support and collaborate with partners around the world who are working to improve the lives of individuals and families affected by Fanconi anemia and other rare conditions.
To help community members explore advocacy opportunities, FCF offers coaching to support them in shaping their story and identifying a clear call to action. Please contact us if you’re interested!
