Join the global alliance of patient-driven organizations working together to advance equity for all Persons Living with a Rare Disease (PLWRD) and their families.
Become a member
Global Community
- Be a part of a global community of rare disease organisations
- Contribute to RDI’s international policy, programmes, and global initiatives
- Take part in RDI Annual Meeting
- Become an official Rare Disease Day partner (RDI National Alliance are Official Partners of the international campaign)
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
strategic engagement
- Build organizational 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 organizations.
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.
- National Single-Disease Organizations for Rare Diseases
National Single-Disease Organizations bring together and represent people affected by one specific rare disease at the country level. Examples include Psoriasis Philippines, Dimus Chile, and Atrofia Multisistémica España.
- 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
Regional Networks bring together National Rare Alliances and federations from a geographical region. Examples include EURORDIS, APARDO and ALIBER
how much does membership cost?
Fees are charged annually and are on a sliding scale according to the organization’s income. The 2025 fees are outlined here.
Eligibility criteria
Full Members:
- Patient-driven organizations (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 organization
- Registered organization
- Proven activity as a collective/umbrella organization
Associate Members:
- Non-profit and non-governmental organizations
- Demonstrating a commitment to rare disease
- Organizations that do not comply with all the criteria for RDI Full Membership can become associate members.
Application Documents
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: debra.bellon@rarediseasesint.org
For more information, please contact the RDI Team