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)
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
Full members are entitled to vote at the General Assembly and to be candidates to the Board of Directors.
Patient organisations that comply with all the above rules are invited to apply for full membership. Associate membership is reserved to the organisations NOT meeting full membership criteria
* one, or all of these criteria could be waived in exceptional cases, due tot he particularity of patient-driven organisations and of rare diseases, as well as for historical or contextual reasons.
Membership fees are based on your organisation’s annual budget:
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”.
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