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!
Only umbrella organisations are eligible for full membership:
National Alliances federate patient organisations from a wide range of diseases within their particular country.
A Federation is the union of patient groups from several countries representing the same disease or the same group of disease.
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.
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.
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.
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]