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Together We Can Make A Difference
For Those Affected By Sarcomas!


Group Profiles


Please find our member organisations listed below. It gives you a sense of SPAEN’s extensive reach and the notable work our members do. This can be in the most challenging of environments, for example where healthcare, medicines and equipment for sarcoma treatments and care do not exist, are in short supply or not accessible equitably. We know that by working together with other organisations and initiatives we can achieve more.


  1. Austria: GIST Support ÖsterreichAustria: GIST Support Österreich
  2. Bulgaria: GIST and STS Alliance for Patients - Bulgaria
  3. Curacao: Synovial Sarcoma Research Foundation
  4. Finland: Finnish GIST Patient Network
  5. France: Info Sarcomes
  6. France: SOS Desmoide France
  7. Germany: Das Lebenshaus e.V./House of Life
  8. Germany: SOS Desmoids
  9. India: Friends of Max GIST
  10. India: SPANDAN (part of V Care)
  11. Israel: Israeli GIST Patients Organisation
  12. Italy: A.I.G. Associazione Italiana GIST
  13. Italy: Le Ali Onlus and COO-BS (Centro di Oncologia Ortopedica – Brescia)
  14. Italy: Luogo di incontro per scambiarsi informazioni sul tumori Desmoide o Fibromatosi agressiva
  15. Italy: Associazione Paola per i Tumori Muscoloscheletrici Onlus
  16. Kenya: Henzo Kenya
  17. Macedonia: GIST Patient Group Macedonia
  18. Netherlands: Contactgroep GIST Nederland - België
  19. Netherlands: Stichting Sarcoma Nederland
  20. Netherlands: Chordoma Foundation Europe
  21. Norway: Sarkomer Norway
  22. Poland: Stow. Pomocy Chorym Na GIST
  23. Poland: Stow. Pomocy Chorym Na Miesaki "SARCOMA"
  24. Romania: HomeCare Association
  25. Spain: Sarcoma Patients Spanish Association/Asociación Española de Afectados por Sarcoma (AEAS)
  26. Sweden: GIST Sverige
  27. Switzerland: Swiss GIST Group
  28. Turkey: Genç Birikim Derneği & Youth Accumulation Association
  29. UK: GIST Support UK and PAWS GIST
  30. UK: Bone Cancer Research Trust
  31. UK: Guy Francis Bone Cancer Research Fund
  32. UK: Sarcoma UK
  33. USA: GSI - GIST Support International
  34. USA: Sarcoma Alliance
  35. USA: The Liddy Shriver Sarcoma Initiative
  36. USA: National Leiomyosarcoma Foundation
  37. USA: The Life Raft Group