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!

 

How to Apply for Membership?

 

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
  5. Bulgaria: TOGETHER FIGHTING SARCOMA
  6. Bulgaria: Sarcomafree Foundation
  7. Brazil: Desmóide Brasil | Associação Brasileira do Tumor Desmóide
  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. Germany: Ultra Rare Sarcoma 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: FUNDACIÓN MARI PAZ JIMENEZ CASADO
  40. Spain: ASARGA – Association of Sarcomas Assistance Groups
  41. Sweden: GIST Sverige
  42. Sweden: Sarkomföreningen
  43. Sweden: Barncancerfonden – The Swedish Childhood Cancer Fund 
  44. Switzerland: Swiss GIST Group
  45. Switzerland: Shane Osteosarcoma Association
  46. Switzerland: Swiss Sarcoma
  47. Turkey: Genç Birikim Derneği & Youth Accumulation Association
  48. Uganda: Uganda Alliance of Patients’ Organizations (UAPO)
  49. UK: Bone Cancer Research Trust
  50. UK: Desmoid Fibromatosis UK Patients & Caregivers
  51. UK: EHE Rare Cancer Charity
  52. UK: George Pantziarka TP53 Trust (GPTP53)
  53. UK: GIST Cancer UK and PAWS GIST
  54. UK: Sarcoma UK
  55. UK: The Boom Foundation
  56. UK: Leiomyosarcoma Research UK
  57. USA: Chondrosarcoma Foundation
  58. USA: Chordoma Foundation
  59. USA: Desmoid Tumour Research Foundation
  60. USA: GSI - GIST Support International
  61. USA: Make IT Better Agents - pediatric osteosarcoma nonprofit
  62. USA: National Leiomyosarcoma Foundation
  63. USA: Sarcoma Strong
  64. USA & International: The Life Raft Group
    - GIST (Gastrointestinal Stromal Tumor)
    - TGCT Support (Tenosynovial Giant Cell Tumor)
    - GCT Support (Giant Cell Tumor)
    - Liposarcoma Support Network 
  65. USA: Sarcoma Alliance
  66. USA: Sarcoma Coalition
  67. USA: Sarcoma Foundation of America
  68. USA: Northwest Sarcoma Foundation
  69. USA: Rein in Sarcoma
  70. USA: Clear Cell Sarcoma Foundation
  71. USA: The EHE Foundation
  72. USA: Pittsburgh Cure Sarcoma