Become a member

7 reasons to become a member of EURORDIS

Be part of a strong and growing rare disease community

Network with peers from around the world

Train to become an empowered patient advocate and build your organisations capacities

Inform and shape European policies on rare diseases

Participate in healthcare and research projects that bring about change for rare disease patients

Get national and disease-specific survey results to feed your advocacy work

Access and share expertise on the topics that matter to you

Read our membership booklet to learn more about the exclusive benefits of becoming a EURORDIS member




Who can apply?

Full membership

Patient organisations*:

  • That are rare disease organisations according to EU prevalence criteria (5/10 000) as defined in the: EU Regulation on Orphan Medicinal Products (1999), Commission Communication on Rare Diseases (2008), Council Recommendation on an Action on Rare Diseases (2009)
  • From a European country (48 countries as defined by EURORDIS based on definitions by the EU, the Council of Europe and the WHO-Europe)
  • With governing boards made up of a majority of rare disease patients or of family members of patients
  • That are financially independent, particularly from the pharmaceutical industry (max. 50% of funding from several companies)
  • Holding non-profit status
  • With proven activities such as patient support and/or advocacy activities and/or research
  • Full members are entitled to vote at the General Assembly and to be candidates to the Board of Directors.

Patient organisations that comply with all the above rules are invited to apply for full membership. Associate membership is reserved to the organisations NOT meeting full membership criteria.

* One, or all, of these criteria could be waived in exceptional cases, due to the particularity of patient-driven organisations and of rare diseases, as well as for historical or contextual reasons.

Full membership fees are based on your organisation’s annual budget:

Associate membership

Patient Organisations that do not comply with all the criteria for full membership can become associate members.

Patient organisations that have been recently (less than 1 year) created are invited to apply for “full membership”, but will qualify for a provisional status as “associate member”.

Fee for associate members: 50 € (independent of income)

How do you apply?

To apply for membership, simply complete and return the membership application form with the following documents:

  1. Statutes of association/constitution
  2. List of your Board of Directors, indicating for each person if they are a patient or family member of a patient
  3. Most recent Annual Report (including financial statement)





Please send your completed application form, together with the necessary supporting documents, to

For further information about EURORDIS membership, contact:

Anja HelmAnja Helm
Manager of Relations with Patient Organisations.
+(33) 1 56 53 52 17



Page created: 19/08/2009
Page last updated: 29/03/2021
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. 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.Rare Barometer 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