Become a member

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

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 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

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

Regional Networks bring together National Rare Alliances and federations from a geographical region. Examples include EURORDIS, APARDO and ALIBER

Eligibility criteria

Full Members:

  • 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

Associate Members:

  • 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.

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:

For more information, please contact the RDI Team