Group Profiles

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Please find our member organisations listed below. It gives you a sense of SPAEN’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 organisations and initiatives we can achieve more.

  1. Australia: Sock it to Sarcoma
  2. Austria: GIST Support Österreich
  3. Bulgaria: GIST and STS Alliance for Patients - Bulgaria
  4. Curacao: Synovial Sarcoma Research Foundation
  5. Finland: Finnish GIST Patient Network
  6. France: Info Sarcomes
  7. France: SOS Desmoide France
  8. Germany: Das Lebenshaus e.V./House of Life
  9. Germany: SOS Desmoids
  10. India: Friends of Max GIST
  11. India: SPANDAN (part of V Care)
  12. Israel: Israeli GIST Patients Organisation
  13. Italy: A.I.G. Associazione Italiana GIST
  14. Italy: Italian Desmoid Foundation
  15. Italy: Le Ali Onlus and COO-BS (Centro di Oncologia Ortopedica – Brescia)
  16. Italy: Luogo di incontro per scambiarsi informazioni sul tumori Desmoide o Fibromatosi agressiva
  17. Italy: Trust Paola Gonzato-Rete Sarcoma Onlus
  18. Italy: Orchestra per la Vita Onlus
  19. Kenya: Henzo Kenya
  20. Macedonia: GIST Patient Group Macedonia
  21. Netherlands: Patient Platform Sarcomen
  22. Netherlands: Chordoma Foundation Europe
  23. Norway: Sarkomer Norway
  24. Poland: Stow. Pomocy Chorym Na GIST
  25. Poland: Stow. Pomocy Chorym Na Miesaki "SARCOMA"
  26. Romania: HomeCare Association
  27. South America: Alianza GIST
  28. Spain: Sarcoma Patients Spanish Association/Asociación Española de Afectados por Sarcoma (AEAS)
  30. Sweden: GIST Sverige
  31. Sweden: Sarkomföreningen
  32. Switzerland: Swiss GIST Group
  33. Switzerland: Swiss Sarcoma
  34. Turkey: Genç Birikim Derneği & Youth Accumulation Association
  35. UK: GIST Support UK and PAWS GIST
  36. UK: Bone Cancer Research Trust
  37. UK: Guy Francis Bone Cancer Research Fund
  38. UK: Sarcoma UK
  39. UK: Desmoid Fibromatosis UK Patients & Caregivers
  40. USA: Chordoma Foundation
  41. USA: Desmoid Tumour Research Foundation
  42. USA: GSI - GIST Support International
  43. USA: Sarcoma Alliance
  44. USA: The Liddy Shriver Sarcoma Initiative
  45. USA: National Leiomyosarcoma Foundation
  46. USA: The Life Raft Group

Please find here a list of global Sarcoma Advocacy Groups known to us. If you have groups, to be added, please let us know at Questo indirizzo email è protetto dagli spambots. È necessario abilitare JavaScript per vederlo.. Thank you very much!