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.

Membership benefits

  • Join a community of 860 patient organisations across the world
  • Be represented at key European Institutions, such as the European Commission, the European Medicines Agency (EMA) and at all stakeholder forums
  • Participate in the EURORDIS Membership Meeting, conference and capacity building workshops
  • Be listed on the EURORDIS website with a direct link to your website
  • Preferential registration rates to the European Conference on Rare Diseases & Orphan Products (ECRD)
  • Post your news and announcements on the EURORDIS website
  • Participate in training sessions, such as the EURORDIS Summer School for Patient Advocates in Drug Development, Clinical Trials & Regulatory Affairs
  • Privileged access to fellowships to attend conferences such as the European Conference on Rare Diseases & Orphan Products (ECRD)
  • 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)

Files to download

Membership application form


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 organization (Board of Directors, contacts, funding, financial data, etc) and send your annual reports

How can you participate?

  • Attend the EURORDIS Membership Meeting and European Conference on Rare Diseases & Orphan Products (ECRD)
  • 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
  • Put forward candidates (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)

Who can apply?

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), and Directive on Patients’ Rights in Cross-Border HealthCare (2011)
  • 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

Patient organisations that have been created recently (less than 1 year ago) are invited to apply for full membership, but will qualify for a provisional status as “associate member”. After one year, and upon examination of their first annual report or other documents provided to show activities and proof of compliance with the membership rules, their membership status can be revised by the Board of Directors.

One or all of these criteria can 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. In all cases, the Board of Directors makes the final decision regarding membership and is not obliged to disclose the reasons of this internal decision, which are recorded in the minutes of the Board meeting.

Rare disease organisations from countries outside of Europe or those exclusively dedicated to diseases with a higher prevalence than 5/10 000 can become associate members.

Annual review process for regular re-assessment of FULL Members

A self-reported update form and request for an annual report & composition of the Organisation’s Board of Directors is sent to the following organisations every year:

  1. Member organisations that present a candidate to the EURORDIS Board elections
  2. National Alliances & European Federations
  3. Full members that joined EURORDIS 10 years before the year of the last update(all full members that joined before December 2013 were sent the reassessment form in 2014)

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 statement)
  • A short description of your main activities and goals (in English if possible)
  • Publications and/or educational materials (if available)

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 e-mail and the EURORDIS member logo. 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.


Full membership fees:

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

Budget (€) Fees (€)
Less than 5 000 25
Between 5 000 and 10 000 50
Between 10 000 and 99 999 100
Between 100 000 and 249 999 200
Between 250 000 and 499 999 400
Between 500 000 and 749 999 600
Between 750 000 and 999 999 1 000
Between 1 000 000 and 2 999 999 1 250
Between 3 000 000 and 4 999 999 2 000
Between 5 000 000 and 19 999 999 5 000
20 000 000 or more 10 000

For associate members, annual fees are 50 €.

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: 11/01/2019
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