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

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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. South Africa: Campaigning for Cancer
  30. Spain: Sarcoma Patients Spanish Association/Asociación Española de Afectados por Sarcoma (AEAS)
  31. Spain: FUNDACIÓN MARI PAZ JIMENEZ CASADO
  32. Sweden: GIST Sverige
  33. Sweden: Sarkomföreningen
  34. Switzerland: Swiss GIST Group
  35. Switzerland: Swiss Sarcoma
  36. Turkey: Genç Birikim Derneği & Youth Accumulation Association
  37. UK: GIST Support UK and PAWS GIST
  38. UK: Bone Cancer Research Trust
  39. UK: Guy Francis Bone Cancer Research Fund
  40. UK: Sarcoma UK
  41. UK: Desmoid Fibromatosis UK Patients & Caregivers
  42. USA: Chordoma Foundation
  43. USA: Desmoid Tumour Research Foundation
  44. USA: GSI - GIST Support International
  45. USA: Sarcoma Alliance
  46. USA: The Liddy Shriver Sarcoma Initiative
  47. USA: National Leiomyosarcoma Foundation
  48. 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!