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 the Member Application 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. India: Sachin Sarcoma Society
  18. Ireland: Sarcoma Cancer Ireland
  19. Israel: Israeli GIST Patients Organisation
  20. Italy: A.I.G. Associazione Italiana GIST
  21. Italy: Italian Desmoid Foundation
  22. Italy: Fondazione Paola Gonzato-Rete Sarcoma ETS
  23. Italy: Orchestra per la Vita Onlus
  24. Kenya: Henzo Kenya
  25. Macedonia: GIST Patient Group Macedonia
  26. Netherlands: Patient Platform Sarcomen
  27. Netherlands: Chordoma Foundation Europe
  28. Norway: Sarkomer Norway
  29. Poland: Stow. Pomocy Chorym Na GIST
  30. Poland: Stow. Pomocy Chorym Na Miesaki "SARCOMA"
  31. Romania: HomeCare Association
  32. South America: Alianza GIST
  33. South Africa: Campaigning for Cancer
  34. Spain: Sarcoma Patients Spanish Association/Asociación Española de Afectados por Sarcoma (AEAS)
  36. Spain: ASARGA - Associacion Sarcomas of Galicia
  37. Sweden: GIST Sverige
  38. Sweden: Sarkomföreningen
  39. Switzerland: Swiss GIST Group
  40. Switzerland: Swiss Sarcoma
  41. Turkey: Genç Birikim Derneği & Youth Accumulation Association
  42. UK: Bone Cancer Research Trust
  43. UK: Desmoid Fibromatosis UK Patients & Caregivers
  44. UK: EHE Rare Cancer Charity
  45. UK: GIST Cancer UK and PAWS GIST
  46. UK: Sarcoma UK
  47. UK: The Myrovlytis Trust
  48. USA: Chondrosarcoma Foundation
  49. USA: Chordoma Foundation
  50. USA: Desmoid Tumour Research Foundation
  51. USA: GSI - GIST Support International
  52. USA: LeiomyoSarcoma Support & Direct Research Foundation
  53. USA: Make IT Better Agents - pediatric osteosarcoma nonprofit
  54. USA: National Leiomyosarcoma Foundation
  55. USA: The Liddy Shriver Sarcoma Initiative
  56. USA: The Life Raft Group
  57. USA: Sarcoma Alliance
  58. USA: Sarcoma Coalition
  59. USA: Sarcoma Foundation of America