Join the global alliance of patient-driven organisations working together to advance equity for all Persons Living with a Rare Disease (PLWRD) and their families.
Become a member
International representation and action
- Be represented at key international institutions and fora
- Help drive ground-breaking rare disease collaborations with the United Nations, World Health, International Rare Diseases Research Consortium and other global partnerships
- Build organisational capacity, and share knowledge and best-practices with umbrella organisations from around the world
- Participate in RDI events and other regional and international conferences and events
- For more on RDI Strategic Engagement and capacity-building opportunities, visit “RDI Engage & Connect”
Who can be a member?
RDI Members are international, regional, and national rare disease organisations.
They may be:
- National Alliances for Rare Diseases
National Alliances bring together organisations or patient advocates from a wide range of rare diseases in one country. Examples include NORD, CORD, Rare Disoders Kenya and the Federación Argentina de Enfermedades Poco Frecuentes.
- International or Regional Federations for Rare Diseases
International and Regional Federations bring together organisations for the same rare disease or disease area at the international or regional level. Examples include World Duchenne, Thalassaemia International and the World Federation of Haemophilia
- Regional Networks for Rare Diseases
- Patient-driven organisations (patients, relatives or carers are members of the Governing Board, or the majority of voting members are patients)
- Prioritise rare diseases and Persons Living with a Rare Disease
- Non-profit and non-governmental organisation
- Registered organisation
- Proven activity as a collective/umbrella organisation
- Non-profit and non-governmental organisations
- Demonstrating a commitment to rare disease
- Organisations that do not comply with all the criteria for RDI Full Membership can become associate members.
To apply, download the following documents and complete the Membership Application
Please send your completed application form and the declaration of Mutual Understanding, together with the necessary supporting documents, to: [email protected]
For more information, please contact the RDI Team