Rare Diseases International

A strong common voice for rare disease patients and their families around the world

Rare Diseases International’s (RDI’s) mission is to be a strong common voice for rare disease patients and their families around the world.

They advocate to make rare diseases an international policy priority, represent our members on international platforms, and help members build their capacity to act locally, regionally and globally.

Rare Diseases International brings together national and regional rare disease patient alliances from around the world as well as international disease-specific federations to create the global alliance of rare disease patients and families. RDI is a network of over 70 member organisations representing rare disease patient groups in over 100 countries worldwide.

Rare Diseases International works to:

• Unite, expand and reinforce the rare disease movement of patient organisations and patient advocates
• Put rare diseases on the agenda of international organisations and multilateral institutions such as the United Nations, ECOSOC and the WHO, and on the national agenda of every country around the world
• Strengthen rare disease patient groups capacity to act at local, national, regional and global levels and to interact with other rare disease groups