Who is a member
- 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?
- What if there are two or three local groups who complete (and maybe don’t agree with each other)?
Can there be multiple members from any one country?
- We encourage a policy of one group per country and generally this has not been difficult. However, in special circumstances where this has not been possible, we have recognised the reality of life on the ground but each country still only has one vote so the groups have to decide on a common response or not vote at all (John Dart from DEBRA)
- Our diseases know no boundaries. Therefore, the members do not represent their country, but only people with the disease. Therefore, it is also irrelevant whether one or more organizations per country co-exist. (Rudolf Kleinsorge from HSP Europe)
- Every group can attend all activities and general assemblies etc, but there’s 1 vote per country and they have to come to an agreement before the voting starts… (Karleen De Rijcke from CF Europe)
- Reflecting the whole country is up to the members – any national organisation does not necessarily represent the interests of all OI people in the country (unless all “patients” should be a member, which is next to impossible…. If there were problems between local groups, we would try to act as mediator. (Ute, from OIFE)