Become a member
7 reasons to become a member of EURORDIS
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Be part of a strong and growing rare disease community
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Network with peers from around the world |
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Train to become an empowered patient advocate and build your organisations capacities
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Inform and shape European policies on rare diseases |
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Participate in healthcare and research projects that bring about change for rare disease patients
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Get national and disease-specific survey results to feed your advocacy work
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Access and share expertise on the topics that matter to you
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Read our membership booklet to learn more about the exclusive benefits of becoming a EURORDIS member
Who can apply?
Full membership
Patient organisations*:
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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)
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From a European country (48 countries as defined by EURORDIS based on definitions by the EU, the Council of Europe and the WHO-Europe)
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With governing boards made up of a majority of rare disease patients or of family members of patients
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That are financially independent, particularly from the pharmaceutical industry (max. 50% of funding from several companies)
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Holding non-profit status
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With proven activities such as patient support and/or advocacy activities and/or research
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Full members are entitled to vote at the General Assembly and to be candidates to the Board of Directors.
* One, or all, of these criteria could 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.
Full membership fees are based on your organisation’s annual budget:

Associate membership
Patient Organisations that do not comply with all the criteria for full membership can become associate members.
Patient organisations 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”.
Fee for associate members: 50 € (independent of income)
How do you apply?
To apply for membership, simply complete and return the membership application form with the following documents:
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Statutes of association/constitution
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List of your Board of Directors, indicating for each person if they are a patient or family member of a patient
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Most recent Annual Report (including financial statement)
Please send your completed application form, together with the necessary supporting documents, to anja.helm@eurordis.org.
For further information about EURORDIS membership, contact:
Anja Helm
Manager of Relations with Patient Organisations.
+(33) 1 56 53 52 17
anja.helm@eurordis.org
Page created: 19/08/2009
Page last updated: 22/07/2019