SPAGN Member Groups

The network only is as strong as its members. SPAGN welcomes every sarcoma, GIST or desmoid patient group and individuals interested in sarcomas worldwide to become part of our network and thus strengthen it.


Why join SPAGN?

Enjoy information exchange with other members, receive SPAGN newsletters and briefings, an invitation to SPAGN’s annual meeting, short description incl. contact information of your organization on our website etc. But most of all: Join forces, because as a united international sarcoma community we all have a better chance to make our voices heard!

Do you want to apply for membership at SPAGN? Please fill out this form and send it to


Our members


Please find our member organizations 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 organizations 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 and Sarcoma 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: 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