SPAEN welcomes every sarcoma, GIST or desmoid patient organisation worldwide, who pledge to conform our pdf Code of Practice (89 KB) , as full member. Full members are entitled to vote at the annual general meeting (AGM).
SPAEN also invites individuals who are interested in starting sarcoma, GIST or desmoid support groups in their own countries as well as professionals and consumers who want to be an integral part of this network, to become supporters of SPAEN.
Types of Membership
- The association has full members who have one voting right per organisation in the General
Meeting. These organisations will be identifiable organisations who may or may not
be legally incorporated according to their country’s laws. An individual person can
be a full member on an interim basis under the condition that he/she has actively planned,
prepared or already begun founding a sarcoma patient group.
- The association has corporate members. These can be commercial enterprises, companies
or other organisations, that would like support the association financially (long-term sustaining partners). Corporate members don’t have voting rights at the General Meeting. The Board organises a yearly meeting with these specific members to inform them about the development of the association.
The Board of the association has to develop and publish directives and guidelines to regulate
the cooperation with corporate members.
Main principles are:
- Neutrality of the association – no exercise of influence from third parties
- Focus on patient needs
- Transparency and disclosure
- The association has supporters without voting right in the General Meeting. These members can be individual medical specialists, treatment centres, clinics, research facilities, expert networks, and professional associations etc. who support the association ideationally or with cooperative projects.