SPAGN member groups


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