Join the European Rare Disease Network

 

For information on how to apply for membership, click here >

Why join Eurordis' Rare Disease network?

Eurordis, the European Organisation for Rare Diseases, is a non-governmental, patient-driven alliance of patient organisations working in the area of rare diseases. Eurordis is the only European rare disease patient organisation, with more than 380 member organisations in 39 countries.

Eurordis' mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives.

Why become a member of Eurordis?

By becoming a Member of Eurordis, you will:

• Join an active Pan-European rare disease community of dedicated people facing similar issues
• Strengthen the voice of people living with rare diseases in Europe.

 

The more members in the network, the broader the range of diseases and countries represented, the more legitimate our movement and the larger our impact.

What are the benefits of Eurordis' membership?

• Be listed on the Eurordis website with a direct link to your website
• Receive the monthly Eurordis e-newsletter, available in six languages
• Receive information on designated orphan drugs
• Share best practices and experience with other patient organisations and the Rare Disease community in Europe
• Post information of interest to you and other patient organisations (conferences, seminars, tenders...) in the Member News & Announcements section of the Eurordis website
• Take part in the European decision making process to influence European and national legislations
• Participate in the Annual Membership Meeting, Conference and workshops on RD specific issues
• Participate in regular training sessions
• Be represented at key European Institutions, such as the European Medicines Agency (EMEA) and the Committee of Orphan Medicinal Products (COMP)
• Participate in the Annual Rare Disease Day
• Be elegible for the Eurordis Summer School

 

How to take part in Eurordis' activities?

You can be involved in our activities as much or as little as you wish. All we ask you to do is:

• To nominate a contact person (English speaking if possible) who will be the main link with Eurordis
• To vote at the Annual General Assembly or nominate a proxy
• To pay the annual membership fee

You can also:

• Take part in some of our projects
• Attend the Annual Membership Meeting (including a conference and workshops)
• Contribute to Eurordis' strategic orientations through its position papers, Committees and Policy Task Forces
• Put forward patients or medical experts on your disease for EMEA or European Commission's requests to Eurordis
• Be a candidate for the Eurordis Board of Directors

 

Membership types

Eurordis' members can be full members or associate members.
While both full and associate members pay membership fees, participate in Eurordis activities, and receive all information updates from Eurordis, only full members are entitled to vote.
Both national rare disease alliances and European rare disease-specific federations are welcome to become a member of Eurordis.

The criteria for full membership are:

• Rare disease organisation, according to EU prevalence criteria (5 / 10 000)
• Organisation from a European country
• The Governing Boards should be made up of a majority of rare disease patients, parents or close relatives of patients.
• Financial independence, particularly from the pharmaceutical industry (max. 50% of funding, from several companies)
• Non-profit status
• Proven patient support and/or advocacy activities and/or research activities
• Patient organisation 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” After one year or more, their membership status can be revised by the board of directors, upon examination of their first annual report or other documents provided..
• Annual review: Membership update to be provided by each member organisation, including the composition of the board and financial data.

One, or all, of these criteria could be waived in exceptional cases, due to the idiosyncrasy both of patient-driven organisations and of rare diseases. 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 Europe, or exclusively dedicated to diseases with a higher prevalence than 5/10 000 can become associate members.

To apply for Eurordis membership

Please complete and return the Membership application form:      

accompanied by your organisation's:

• by-laws
• the list of the Board of Directors, and their capacity (patient, parent...)
• most recent Annual Report (including the financial report)
• publications and/or educational materials (if available)

The procedure is identical for both full or associate membership applications.

Once we have received all the relevant information, your application will be examined by our internal committee. You will then receive confirmation that your application will be submitted at the next Board of Directors or Board of Officers meeting.

If the application is approved by the Board of Directors or Officers, the organisation receives a "welcome letter and package" and a membership fees form from the President. Once the annual membership fees have been received, the applicant organisation is officially a member of Eurordis.

If the application is rejected by the Board of Directors or Officers, the organisation receives a notification letter from the President.

Membership fees

The membership fees are voted annually by the General Assembly.
Fees are based on the previous year's annual budget of the member organisation.

     

Full membership fees

Budget in Euros	Fees in Euros
Less than 10 000	20
Between 10 000 and 99 999	50
Between 100 000 and 499 999	100
Between 500 000 and 999 999	500
1 000 000 or more	1 000

 

 

 

 

 

 

 

 

 

   

 

 

Associate membership fees

Annual associate membership fees are 20 euros

 

Questions?

For further information about Eurordis membership, contact:

Anja Helm, Manager of Relations with Patient Organisations
E-mail: anja.helm@eurordis.org
Tel: + 33 1 56 53 52 17
 

 

 

 

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