Femida Gwady-Sridhar, PhD, talks her involvement with Rare Disease International (RDI).
RDI is a global alliance of rare disease patient organizations designed to be an international voice for the rare disease community. As Dr. Gwady-Sridhar explains in this video, “Rare disease is not local, it is global. That means that we have to focus our initiatives on not just collecting data from North America, Eastern and Western Europe, but also reaching other populations that have so much to contribute. Each patient’s journey is very distinct and you never really learn that until you talk to people around the world.”
RDI has over 50 member organizations from more than 30 countries. RDI’s objectives are to:
- Promote rare diseases as an international public health and research priority through public awareness and policy-making
- Represent its members and people living with a rare disease in international institutions and forums
- Enhance the capacities of its members through information, exchange, networking, mutual support and joint actions
For more information, visit www.rarediseasesinternational.org/