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 community of Rare Disease Alliances across the world
  • Be represented at key international institutions
  • Develop and advocate for common positions
  • Share experience and information internationally
  • Participate in the annual RDI meeting
  • 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?

Only umbrella organisations are eligible for full membership:

  • National Alliances for Rare Diseases worldwide

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

  • International Federations for Rare Diseases worldwide

A Federation is the union of patient groups from several countries representing the same disease or the same group of disease.

  • Pan-regional networks for Rare Diseases worldwide

Pan-regional organisations for rare diseases can gather national Rare Disease Alliances and other patient organisations from a geographical region

In exceptional cases, a patient group with an international scope for an extremely rare disease which is not an umbrella organisation, will be considered for full membership.

Eligibility criteria

Full members

  • Rare disease organisation, according to country definition (i.e. EU 5 / 10 000, US ≥ 200, 000 people)
  • Non-profit status
  • Legal status of the umbrella organization or one of its members
  • Patient-driven (ie Governing Boards made up of a majority of patients and/or relatives, majority of voting members are patients)
  • Financial transparency and diversified funding showing independence and minimisation of risk of conflict of interest
  • Proven activity as a collective/umbrella organisation (ie. adopting common positions, joint actions, integrative services)

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

  • ≥ 1 year of existence
  • International federations for common diseases that include rare diseases
  • Single rare disease patient groups in a country where there is no National Rare Disease Alliance
  • Single rare disease patient groups in one country with proven links with other same-disease group in at least 3 countries
  • Non patient-driven organisations or professional organisations or other type of entity active in the field of rare diseases and contributing to the objectives of RDI by their mission and work

 

Pharmaceutical or biotech companies cannot be Association members

 

Associate members cannot be elected to or vote at 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 read these documents, fill out and sign the Membership Application & Mutual Understanding and send to: [email protected]

 



 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.European Conference on Rare Diseases An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases