Become a member

We aim to bring all umbrella rare disease patient organisations in every country and all regional and international networks for every rare disease into one global community to speak with one voice. We are building the rare disease patient movement of tomorrow. Come and join us today!

Why become a member?

  • Join a global community of rare disease alliances and be part of an increasingly strong global voice for rare disease patients
  • Be represented at key international institutions
  • Develop and advocate for common positions to influence or encourage international policy that improves the lives of your members
  • Share experience and information internationally on a dedicated online platform
  • Participate in RDI meetings
  • Be listed on the RDI website with a direct link to your website
  • Be a privileged Rare Disease Day participant

Who can become a member?

  • Umbrella organisations representing several rare diseases in one country
    •  National alliances
  • Umbrella organisations representing the same disease or family of diseases in several countries
    • International Federations
  • Umbrella organisations representing national alliances or other patient groups in several countries across a geographical region

Eligibility criteria

Full members

  • Be a rare disease organisation, according to EU prevalence criteria (5 / 10 000)
  • Your Governing Boards should be usually made up of a majority of rare disease patients or family of patients
  • Financial transparency and diversified funding showing independence and minimisation of risk of conflict of interest
  • Non-profit status
  • Proven activities such as patient support and/or advocacy activities and/or research.

As a general rule RDI will not accept membership applications from local patient groups unless there is no established National Alliance in the country they are applying from. The governing body of RDI will take decisions on a case-by-case basis and exceptions to the eligibility criteria can be made under special circumstances.

Associate members

  • Patient organisations or any other entity contributing to the objectives of RDI by their mission and work can apply to become an associate member.
  • Associate members cannot vote or be elected to the Council of RDI.

Application Documents

Interested in becoming a member? To apply, download the following documents

Please read these documents, fill out and sign the Membership Application & Mutual Understanding and send to:


EURORDIS Rare Disease International RareConnect Rare Disease Day European Conference on Rare Diseases