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 and ideas.
The EU would be more sympathetic to a European group that has a large membership base, made of individuals or local and national groups, that in terms of numbers can be seen as ‘meaningfully representative’.
A hybrid has also been proposed, of both types of members, but before a vote, all people under the rubrik of country would lobby and one vote would be made for the country, regardless of the type of member.
- Our membership is organisational and delegates for meetings or candidates for election to our Executive Committee are nominated by their group. (John Dart from DEBRA)
- Active members of the European group should be a representative of each country and be designated by the national groups or were elected. (Rudolf Kleinsorge from HSP Europe)
- I think individuals (patients, families…) should be members of the national associations and these national groups should represent their members in the European association. It may be different for very rare diseases, where the number of patients in a country may be very limited. For these isolated people it may be necessary to be a member of a European association because a national group may not have enough members to function and or achieve a lot. (Karleen De Rijcke from CF Europe)
- We are a “federation” of national OI associations or OI support organisations like foundations (meant to collect money to help individual OI people). Individuals are possible as members, but only as “advisory or honorary members” (see our bylaws, Art. 3.2 IV + V) – but so far we have only an “honorary president” (our former Dutch president) and we are not too interested in too many individual members.
We have full (mainly European) members and associate (normally non-European) members, each member is represented by 1 delegate – the delegates come together at our annual meetings. There is no maximum number of members per country. (Ute, from OIFE)
EuroAtaxia considers four kind of members:
- Full members;
- Associate members;
- Affiliated members;
- and Honorary members.
- Full members: National Associations for Ataxia from Member States of the EU. They have the right to vote.
- Associate members: National Associations for Ataxia from countries outside the EU. They have the right to vote, except in matters relating directly to the EU.
- Affiliated members: Charitable organisations that do not meet the criteria required for full or associate members, as well as individuals from countries where no National Association for Ataxia is in existence. They nave not the right to vote..
- Honorary members: Individuals or associations liable to make any valuable contribution to Euro-Ataxia. They have not the right to vote.