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

Group Profiles

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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. Belgium: Cum Cura
  4. Bulgaria: GIST and STS Alliance for Patients - Bulgaria
  5. Curacao: Synovial Sarcoma Research Foundation
  6. Finland: Finnish GIST Patient Network
  7. France: Info Sarcomes
  8. France: SOS Desmoide France
  9. Germany: Das Lebenshaus e.V./House of Life
  10. Germany: SOS Desmoids
  11. India: Friends of Max GIST
  12. India: SPANDAN (part of V Care)
  13. Israel: Israeli GIST Patients Organisation
  14. Italy: A.I.G. Associazione Italiana GIST
  15. Italy: Italian Desmoid Foundation
  16. Italy: Le Ali Onlus and COO-BS (Centro di Oncologia Ortopedica – Brescia)
  17. Italy: Luogo di incontro per scambiarsi informazioni sul tumori Desmoide o Fibromatosi agressiva
  18. Italy: Trust Paola Gonzato-Rete Sarcoma Onlus
  19. Italy: Orchestra per la Vita Onlus
  20. Kenya: Henzo Kenya
  21. Macedonia: GIST Patient Group Macedonia
  22. Netherlands: Patient Platform Sarcomen
  23. Netherlands: Chordoma Foundation Europe
  24. Norway: Sarkomer Norway
  25. Poland: Stow. Pomocy Chorym Na GIST
  26. Poland: Stow. Pomocy Chorym Na Miesaki "SARCOMA"
  27. Romania: HomeCare Association
  28. South America: Alianza GIST
  29. Spain: Sarcoma Patients Spanish Association/Asociación Española de Afectados por Sarcoma (AEAS)
  30. Spain: FUNDACIÓN MARI PAZ JIMENEZ CASADO
  31. Sweden: GIST Sverige
  32. Sweden: Sarkomföreningen
  33. Switzerland: Swiss GIST Group
  34. Switzerland: Swiss Sarcoma
  35. Turkey: Genç Birikim Derneği & Youth Accumulation Association
  36. UK: GIST Support UK and PAWS GIST
  37. UK: Bone Cancer Research Trust
  38. UK: Guy Francis Bone Cancer Research Fund
  39. UK: Sarcoma UK
  40. UK: Desmoid Fibromatosis UK Patients & Caregivers
  41. USA: Chordoma Foundation
  42. USA: Desmoid Tumour Research Foundation
  43. USA: GSI - GIST Support International
  44. USA: Sarcoma Alliance
  45. USA: The Liddy Shriver Sarcoma Initiative
  46. USA: National Leiomyosarcoma Foundation
  47. 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 e-mail address is being protected from spambots. You need JavaScript enabled to view it.. Thank you very much!