Rare Disease Day

The Ivan and Joan Foundation is dedicated to advocating for the well-being of people living with rare diseases, including Fanconi Anemia. As part of this mission, we were honored to participate as patient advocates in the Rare Disease Symposium held at Muhimbili University of Health and Allied Sciences (MUHAS). The symposium was conducted under the theme: "Rare Diseases: More Than You Can Imagine."

Establishment of a rare disease database

- Establishment of a specialized treatment centre for rare disease patients (a Centre of Excellence) that would provide diagnostic tools, orphan drugs, and psychosocial support services.

- ⁠Insurance policies to include exceptional provisions for rare diseases so that they can at least cover about 50% of the treatment costs.

- Establishment of a special rare disease department within the Ministry of Health

- Incorporate rare diseases in national health strategic plans