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The Council of European Rare Disease Federations provides a platform for the exchange of experiences and information across federations working for different diseases or group of diseases.
Membership
Membership – is it organisational or individual?
The question There are various possibilites. Both organisational as well as individual membership have their positive and negative sides. Organisational membership may be more ” powerful” while individual may be faster in terms of voting and moving forward on projects … Read More
Membership fees
Are membership fees necessary ? The membership fees promote a sense of shared ownership (John Dart from DEBRA) Membership fees of sick persons are not necessary. Membership contributions of each national association can be useful. (Rudolf Kleinsorge from HSP Europe) Membership … Read More
Who is a member
Some questions Can there be multiple members from any one country? There may be many members, but generally one country/one vote seems the most desired goal. Should members reflect the whole country they are from or just their individual organisation? … Read More