Become a Member

One global community speaking with one voice

Rare Diseases International aims 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.

Be part of a community building the rare disease patient movement of tomorrow. 

Why become a member?

  • Join a community of rare disease alliances across the globe
  • Be represented at key international institutions
  • Develop and advocate for common positions
  • Participate in the annual RDI meeting
  • Be listed on the RDI website with a direct link to your website
  • Become an official Rare Disease Day partner
  • Share your events on the RDI website and Twitter account
  • Access RDI’s online community where our members can connect, share information and work together
  • Share experience and information internationally

Who can become a member?

RDI members are international, regional and national organisations for rare diseases. They may be:

  • National Alliances for Rare Diseases

National Alliances federate patient organisations or patient advocates from a wide range of rare diseases within their particular country.

  • International Federations for Rare Diseases

International Federations unite patient groups from several countries representing the same disease or the same group of diseases.

  • Regional Networks for Rare Diseases

Regional Networks gather National Rare Disease Alliances and other patient organisations from a geographical region.

Eligibility criteria

Full Members:

  • Are Patient-driven and patient-led organisations (i.e. Governing Boards made up of a majority of patients and/or relatives, majority of voting members are patients)
  • Are rare disease organisations according to a recognised national or regional definition
  • Are non-profit and non-governmental organisations
  • Have a legal status as an umbrella organisation or legal status through one of their members
  • Have financial transparency and diversified funding showing independence and minimisation of risk of conflict of interest
  • Have proven activity as a collective/umbrella organisation

Associate Members:

  • Are non-profit and non-governmental organisations demonstrating a commitment to rare disease
  • Organisations that do not comply with all the criteria for full membership can become associate members.
  • Patient organisations that have been recently created (less than 1 year) are invited to apply for “full membership”, but will qualify for a provisional status of “associate member”.

Associate members cannot be elected to or vote on the Council of RDI

Any criteria for full or associate membership can be waived at the discretion of the Council of RDI.

Application Documents

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

Please send your completed application form and the declaration of Mutual Understanding, together with the necessary supporting documents to : [email protected]

For more information about RDI membership contact:

Hlawulani Mkhabela

RDI Outreach and Engagement

[email protected]