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. Brazil: Desmóide Brasil | Associação Brasileira do Tumor Desmóide
  7. Curacao: Synovial Sarcoma Research Foundation
  8. Finland: Finnish GIST and Sarcoma Patient Network
  9. France: Info Sarcomes
  10. France: SOS Desmoide France
  11. Germany: Deutsche Sarkom-Stiftung/German Sarcoma Foundation
  12. Germany: SOS-Desmoid
  13. Germany: SMARCB1 e.V.
  14. Hungary: Érintettek Association
  15. Hungary: Recovering Together Association/Gyógyulj Velünk Egyesület
  16. India: Friends of Max GIST
  17. India: SPANDAN (part of V Care)
  18. India: DigiSwasthya Foundation
  19. India: Sachin Sarcoma Society
  20. Ireland: Sarcoma Cancer Ireland
  21. Israel: Israeli GIST Patients Organisation
  22. Italy: A.I.G. Associazione Italiana GIST
  23. Italy: Italian Desmoid Foundation
  24. Italy: Fondazione Paola Gonzato-Rete Sarcoma ETS
  25. Italy: MC4 in corsa per la vita!
  26. Italy: Orchestra per la Vita Onlus
  27. Japan: GISTERS
  28. Kenya: Henzo Kenya
  29. Macedonia: GIST Patient Group Macedonia
  30. Netherlands: Patientenplatform Sarcomen
  31. Netherlands: Chordoma Foundation Europe
  32. Norway: Sarkomer Norway
  33. Poland: Stow. Pomocy Chorym Na GIST
  34. Poland: Stow. Pomocy Chorym Na Miesaki "SARCOMA"
  35. Romania: HomeCare Association
  36. South America: Alianza GIST
  37. South Africa: Campaigning for Cancer
  38. Spain: Sarcoma Patients Spanish Association/Asociación Española de Afectados por Sarcoma (AEAS)
  40. Spain: ASARGA – Association of Sarcomas Assistance Groups
  41. Sweden: GIST Sverige
  42. Sweden: Sarkomföreningen
  43. Switzerland: Swiss GIST Group
  44. Switzerland: Swiss Sarcoma
  45. Turkey: Genç Birikim Derneği & Youth Accumulation Association
  46. UK: Bone Cancer Research Trust
  47. UK: Desmoid Fibromatosis UK Patients & Caregivers
  48. UK: EHE Rare Cancer Charity
  49. UK: George Pantziarka TP53 Trust (GPTP53)
  50. UK: GIST Cancer UK and PAWS GIST
  51. UK: Sarcoma UK
  52. UK: The Myrovlytis Trust
  53. USA: Chondrosarcoma Foundation
  54. USA: Chordoma Foundation
  55. USA: Desmoid Tumour Research Foundation
  56. USA: GSI - GIST Support International
  57. USA: LeiomyoSarcoma Support & Direct Research Foundation
  58. USA: Make IT Better Agents - pediatric osteosarcoma nonprofit
  59. USA: National Leiomyosarcoma Foundation
  60. USA: Sarcoma Strong
  61. USA: The Liddy Shriver Sarcoma Initiative
  62. USA: The Life Raft Group
  63. USA: Sarcoma Alliance
  64. USA: Sarcoma Coalition
  65. USA: Sarcoma Foundation of America
  66. USA: Northwest Sarcoma Foundation
  67. USA: Rein in Sarcoma