Become a Member of EURORDIS
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
At EURORDIS, we have full and associate memberships.
- 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 rareconnect.org
- Be a privileged Rare Disease Day participant (last day of February each year, rarediseaseday.org
- Vote at the general assembly (Full members only)
- Be elected to the board of Directors of EURORDIS (Full members only)
Files to download
How to become a member of EURORDIS
1. Who can apply?
- 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’ Right to Cross-Border HealthCare(2011)
- From a European country (48 countries as defined by EURORDIS based on definitions by EU, Council of Europe, WHO-Europe)
- With Governing Boardsmade up of a majority of rare disease patients or of the family members of patients
- 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 recently created (less than 1 year) are invited to apply for “full membership”, but will qualify for a provisional status as “associate member”. After one year or more 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.
Rare disease organisations from countries outside of Europe, or exclusively dedicated to diseases with a higher prevalence than 5/10 000 can become associate members.
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 pack 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.
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):
|Less than 10 000
|Between 10 000 and 99 999
|Between 100 000 and 499 999
|Between 500 000 and 999 999
|1 000 000 or more
For associate members, annual fees are 25 €.
Contact Anja Helm for more details: [email protected]