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 837 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 rareconnect.org
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:

Member organisations that present a candidate to the EURORDIS Board elections
National Alliances & European Federations
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