Eurordis: The Voice of Rare Diseases in Europe

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Become a member

Join a vibrant pan-European community of dedicated people facing similar issues and strengthen the voice of people living with rare diseases in Europe and beyond.

Eurordis rare disease membership Eurordis meeting about rare diseases.

At EURORDIS, we have full and associate memberships. Benefits

  • Join a community of more than 600 patient organisations across the world
  • Be represented at key European Institutions, such as the European Commission, the European Medicines Agency (EMA) and the Committee of Orphan Medicinal Products (COMP)
  • Post your news and announcements in the “Members News and Announcements” section of the EURORDIS website
  • Participate in training sessions, such as the EURORDIS Summer School for Patient Advocates in Drug Development, Clinical Trials & Regulatory Affairs
  • Obtain fellowships to attend conferences such as the European Conference on Rare Diseases, & Orphan Products, the Drug Development Association’s EuroMeeting and others
  • Participate in the EURORDIS Membership Meeting, conference and capacity building workshops
  • Be listed on the EURORDIS website with a direct link to your website
  • Set up an online patient community for your disease through
  • Be a privileged Rare Disease Day participant (last day of February each year,
  • Vote at the general assembly (Full members only)
  • Be elected to the board of Directors of EURORDIS (Full members only)

How to become a member of EURORDIS

1. Who can apply?

Patient organisations:

  • Representing one or more rare diseases (defined by EU prevalence 5/10,000)
  • Registered or located in a European country (as defined by the Council of Europe)
  • with a majority of rare disease patients or close relatives of patients on its Board of Directors
  • Financially independent from the pharmaceutical industry (max. 50% of funding, from several companies.)
  • Holding not for profit status
  • Focusing on patient support and/or advocacy and/or research activities

Rare disease organisations that do not comply with all of the above criteria can apply for associate membership. 
Patient organisations that have been recently created (less than 1 year) are invited to apply for full membership, but will only qualify for a provisional status as “associate member”. After 1 year or more, their membership status can be revised by the Board, upon examination of their 1st Annual Report.

2. How do you apply?

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

  • Statutes of your organisation
  • The names of your Board of Directors, indicating for each person whether they are patients or family members of patients.
  • Your most recent Annual Report (including the financial report)
  • A short description of your main activities and goals (in English if possible)
  • Publications and/or educational materials (if available)

3. What is required of your organisation?

  • Nominate a contact person (English speaking if possible) who will be the primary link with EURORDIS.
  • Pay the annual membership fee. (see page 7 for details)
  • Keep us informed of changes in your organisation (Board of Directors, contacts, funding, financial data, etc) and send us annual reports.

4. How do you know if you have been approved?

Once we have received all the relevant information, your application will be examined by our staff and submitted at the next Board of Directors or Board of Officers meeting.

  • If the application is approved by the Board of Directors, your organisation receives a “welcome letter and package” from the President. The applicant organisation is officially a member of EURORDIS once the first annual membership fees have been received.
  •  If the application is rejected by the Board of Directors, the organisation receives a notification letter from the President.

5. How can you participate?

  • Attend the Eurordis Membership Meeting and European Conference on Rare Diseases & Orphan Products
  • Take part in some of our projects Participate in regular surveys
  • Contribute to EURORDIS’ strategic orientations through its position papers, Committees and Policy Task Forces
  • Nominate patients or medical experts on your disease for European Medicines Agency Committees or meetings
  • Be a candidate for the EURORDIS Board of Directors (full members only)
  • Vote at the general assembly (full members only)

6. Membership fees

Full membership fees:

Full membership fees are based on your organisation’s annual budget (previous year):

Budget (€) Fees (€)
Less than 10 000 25
Between 10 000 and 99 999 75
Between 100 000 and 499 999 200
Between 500 000 and 999 999 600
1 000 000 or more 1 250

For associate members, annual fees are 25 €.

For further information about EURORDIS membership, contact:

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