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 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: Patient Platform Sarcomen
  19. Netherlands: Chordoma Foundation Europe
  20. Norway: Sarkomer Norway
  21. Poland: Stow. Pomocy Chorym Na GIST
  22. Poland: Stow. Pomocy Chorym Na Miesaki "SARCOMA"
  23. Romania: HomeCare Association
  24. South America: Alianza GIST
  25. Spain: Sarcoma Patients Spanish Association/Asociación Española de Afectados por Sarcoma (AEAS)
  27. Sweden: GIST Sverige
  28. Switzerland: Swiss GIST Group
  29. Turkey: Genç Birikim Derneği & Youth Accumulation Association
  30. UK: GIST Support UK and PAWS GIST
  31. UK: Bone Cancer Research Trust
  32. UK: Guy Francis Bone Cancer Research Fund
  33. UK: Sarcoma UK
  34. USA: Desmoid Tumour Research Foundation
  35. USA: GSI - GIST Support International
  36. USA: Sarcoma Alliance
  37. USA: The Liddy Shriver Sarcoma Initiative
  38. USA: National Leiomyosarcoma Foundation
  39. USA: The Life Raft Group