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. Australia: Sock it to Sarcoma
  2. Austria: GIST Support Österreich
  3. Bulgaria: GIST and STS Alliance for Patients - Bulgaria
  4. Curacao: Synovial Sarcoma Research Foundation
  5. Finland: Finnish GIST Patient Network
  6. France: Info Sarcomes
  7. France: SOS Desmoide France
  8. Germany: Das Lebenshaus e.V./House of Life
  9. Germany: SOS Desmoids
  10. India: Friends of Max GIST
  11. India: SPANDAN (part of V Care)
  12. Israel: Israeli GIST Patients Organisation
  13. Italy: A.I.G. Associazione Italiana GIST
  14. Italy: Le Ali Onlus and COO-BS (Centro di Oncologia Ortopedica – Brescia)
  15. Italy: Luogo di incontro per scambiarsi informazioni sul tumori Desmoide o Fibromatosi agressiva
  16. Italy: Associazione Paola per i Tumori Muscoloscheletrici Onlus
  17. Kenya: Henzo Kenya
  18. Macedonia: GIST Patient Group Macedonia
  19. Netherlands: Patient Platform Sarcomen
  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. South America: Alianza GIST
  26. Spain: Sarcoma Patients Spanish Association/Asociación Española de Afectados por Sarcoma (AEAS)
  28. Sweden: GIST Sverige
  29. Switzerland: Swiss GIST Group
  30. Turkey: Genç Birikim Derneği & Youth Accumulation Association
  31. UK: GIST Support UK and PAWS GIST
  32. UK: Bone Cancer Research Trust
  33. UK: Guy Francis Bone Cancer Research Fund
  34. UK: Sarcoma UK
  35. USA: Desmoid Tumour Research Foundation
  36. USA: GSI - GIST Support International
  37. USA: Sarcoma Alliance
  38. USA: The Liddy Shriver Sarcoma Initiative
  39. USA: National Leiomyosarcoma Foundation
  40. USA: The Life Raft Group

Please find here a list of global Sarcoma Advocacy Groups known to us. If you have groups, to be added, please let us know at This email address is being protected from spambots. You need JavaScript enabled to view it.. Thank you very much!

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