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.


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