SPAEN member groups


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: Deutsche Sarkom-Stiftung/German Sarcoma Foundation
  10. Germany: SOS-Desmoid
  11. Germany: SMARCB1 e.V.
  12. Hungary: Recovering Together Association/Gyógyulj Velünk Egyesület
  13. India: Friends of Max GIST
  14. India: SPANDAN (part of V Care)
  15. India: DigiSwasthya Foundation
  16. Israel: Israeli GIST Patients Organisation
  17. Italy: A.I.G. Associazione Italiana GIST
  18. Italy: Italian Desmoid Foundation
  19. Italy: Trust Paola Gonzato-Rete Sarcoma Onlus
  20. Italy: Orchestra per la Vita Onlus
  21. Kenya: Henzo Kenya
  22. Macedonia: GIST Patient Group Macedonia
  23. Netherlands: Patient Platform Sarcomen
  24. Netherlands: Chordoma Foundation Europe
  25. Norway: Sarkomer Norway
  26. Poland: Stow. Pomocy Chorym Na GIST
  27. Poland: Stow. Pomocy Chorym Na Miesaki "SARCOMA"
  28. Romania: HomeCare Association
  29. South America: Alianza GIST
  30. South Africa: Campaigning for Cancer
  31. Spain: Sarcoma Patients Spanish Association/Asociación Española de Afectados por Sarcoma (AEAS)
  33. Spain: ASARGA - Associacion Sarcomas of Galicia
  34. Sweden: GIST Sverige
  35. Sweden: Sarkomföreningen
  36. Switzerland: Swiss GIST Group
  37. Switzerland: Swiss Sarcoma
  38. Turkey: Genç Birikim Derneği & Youth Accumulation Association
  39. UK: Bone Cancer Research Trust
  40. UK: Desmoid Fibromatosis UK Patients & Caregivers
  41. UK: EHE Rare Cancer Charity
  42. UK: GIST Cancer UK and PAWS GIST
  43. UK: Guy Francis Bone Cancer Research Fund
  44. UK: Sarcoma UK
  45. UK: The Myrovlytis Trust
  46. USA: Chondrosarcoma Foundation
  47. USA: Chordoma Foundation
  48. USA: Desmoid Tumour Research Foundation
  49. USA: GSI - GIST Support International
  50. USA: LeiomyoSarcoma Support & Direct Research Foundation
  51. USA: Make IT Better Agents - pediatric osteosarcoma nonprofit
  52. USA: National Leiomyosarcoma Foundation
  53. USA: The Liddy Shriver Sarcoma Initiative
  54. USA: The Life Raft Group
  55. USA: Sarcoma Alliance
  56. USA: Sarcoma Coalition
  57. USA: Sarcoma Foundation of America