SPAGN Member Groups

SPAGN23 Member Groups_landscape

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: Érintettek Association
  14. Hungary: Recovering Together Association/Gyógyulj Velünk Egyesület
  15. India: Friends of Max GIST
  16. India: SPANDAN (part of V Care)
  17. India: DigiSwasthya Foundation
  18. India: Sachin Sarcoma Society
  19. Ireland: Sarcoma Cancer Ireland
  20. Israel: Israeli GIST Patients Organisation
  21. Italy: A.I.G. Associazione Italiana GIST
  22. Italy: Italian Desmoid Foundation
  23. Italy: Fondazione Paola Gonzato-Rete Sarcoma ETS
  24. Italy: Orchestra per la Vita Onlus
  25. Kenya: Henzo Kenya
  26. Macedonia: GIST Patient Group Macedonia
  27. Netherlands: Patientenplatform Sarcomen
  28. Netherlands: Chordoma Foundation Europe
  29. Norway: Sarkomer Norway
  30. Poland: Stow. Pomocy Chorym Na GIST
  31. Poland: Stow. Pomocy Chorym Na Miesaki "SARCOMA"
  32. Romania: HomeCare Association
  33. South America: Alianza GIST
  34. South Africa: Campaigning for Cancer
  35. Spain: Sarcoma Patients Spanish Association/Asociación Española de Afectados por Sarcoma (AEAS)
  37. Spain: ASARGA - Associacion Sarcomas of Galicia
  38. Sweden: GIST Sverige
  39. Sweden: Sarkomföreningen
  40. Switzerland: Swiss GIST Group
  41. Switzerland: Swiss Sarcoma
  42. Turkey: Genç Birikim Derneği & Youth Accumulation Association
  43. UK: Bone Cancer Research Trust
  44. UK: Desmoid Fibromatosis UK Patients & Caregivers
  45. UK: EHE Rare Cancer Charity
  46. UK: George Pantziarka TP53 Trust (GPTP53)
  47. UK: GIST Cancer UK and PAWS GIST
  48. UK: Sarcoma UK
  49. UK: The Myrovlytis Trust
  50. USA: Chondrosarcoma Foundation
  51. USA: Chordoma Foundation
  52. USA: Desmoid Tumour Research Foundation
  53. USA: GSI - GIST Support International
  54. USA: LeiomyoSarcoma Support & Direct Research Foundation
  55. USA: Make IT Better Agents - pediatric osteosarcoma nonprofit
  56. USA: National Leiomyosarcoma Foundation
  57. USA: The Liddy Shriver Sarcoma Initiative
  58. USA: The Life Raft Group
  59. USA: Sarcoma Alliance
  60. USA: Sarcoma Coalition
  61. USA: Sarcoma Foundation of America