Who We Are

Rare Diseases International (RDI) is the global alliance of people living with a rare disease of all nationalities across all rare diseases. RDI’s mission is to be a strong common voice on behalf of rare disease patients around the world, to advocate for rare diseases as an international public health priority and to represent its members and enhance their capacities. RDI has more than 90 member organizations from 46 countries, that in turn represent rare disease patient groups in more than 150 countries worldwide. 


RDI membership

47 National Alliances

Representing all Rare Diseases in one country

33 international federations

Representing the same Rare Disease or disease area internationally

3 Regional Alliances

Representing multiple national alliances across a geographical region

9 Multi-stakeholder platforms

Platforms for Multiple Stakeholders in the Rare Disease Community