SPAEN welcomes every Sarcoma, GIST or Desmoid Patient Group/Organisation in Europe as Full Member. Full Members are entitled to vote at the Annual General Assembly. All other PAGs from outside Europe are welcome to join SPAEN as Associate Members.

Among the benefits of membership are: information exchange with other members, receiving SPAEN Newsletters and Briefings, an invitation to SPAEN’s annual meeting, mention of your organisation on our website, and finally, as part of a united international sarcoma community we all have a better chance to have our voices heard.

SPAEN Full Members are currently (as of 01.11.2014):

  1. Bulgaria: GIST Alliance for Patients Bulgaria
  2. Finland: Finnish GIST Patient Network
  3. France: A.F.P.G. "Ensemble contre le GIST"
  4. France: Info Sarcomes
  5. France: SOS Desmoide France
  6. Germany: Das Lebenshaus e.V./House of Life
  7. Germany: SOS Desmoids
  8. Italy: A.I.G. Associazione Italiana GIST
  9. Italy: Le Ali Onlus
  10. Italy: Luogo di incontro per scambiarsi informazioni sul tumori Desmoide o Fibromatosi agressiva
  11. Italy: Associazione Paola per i Tumori Muscoloscheletrici. Onlus
  12. Macedonia: Patient Advocate from Macedonia
  13. Netherlands: Contactgroep GIST
  14. Netherlands: Stichting Sarcoma Nederlands
  15. Netherlands: Chordoma Foundation Europe
  16. Norway: Sarkomer
  17. Poland: Stow. Pomocy Chorym Na GIST
  18. Poland: Stow. Pomocy Chorym Na Miesaki "Sarcoma"
  19. Romania: HomeCare Association
  20. Spain: Sarcoma Patients Spanish Association/Asociación Española de Afectados por Sarcoma (AEAS)
  21. Sweden: GIST Sverige
  22. Switzerland: GIST Gruppe Schweiz
  23. UK: GIST Support UK
  24. UK: Bone Cancer Research Trust
  25. UK: Guy Francis Bone Cancer Research Fund
  26. UK: Sarcoma UK

SPAEN Associate Members (as of 01.11.2014):

  1. Curacao: Synovial Sarcoma Research Foundation
  2. Israel: Israeli GIST patient organisation
  3. Turkey: Genç Birikim Derneği Youth Accumulation Association (Associate Member)
  4. USA: GSI - GIST Support International
  5. USA: Sarcoma Alliance
  6. USA: The Liddy Shriver Sarcoma Initiative

Here you can find the SPAEN Membership Application Form. Please complete the form and send it via email to This email address is being protected from spambots. You need JavaScript enabled to view it. or via fax to +49 89 62836808


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