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. Belgium: Cum Cura
  4. Bulgaria: GIST and STS Alliance for Patients - Bulgaria
  5. Curacao: Synovial Sarcoma Research Foundation
  6. Finland: Finnish GIST Patient Network
  7. France: Info Sarcomes
  8. France: SOS Desmoide France
  9. Germany: Deutsche Sarkom-Stiftung/German Sarcoma Foundation
  10. Germany: SOS Desmoids
  11. Hungary: Recovering Together Association/Gyógyulj Velünk Egyesület
  12. India: Friends of Max GIST
  13. India: SPANDAN (part of V Care)
  14. Israel: Israeli GIST Patients Organisation
  15. Italy: A.I.G. Associazione Italiana GIST
  16. Italy: Italian Desmoid Foundation
  17. Italy: Le Ali Onlus and COO-BS (Centro di Oncologia Ortopedica – Brescia)
  18. Italy: Luogo di incontro per scambiarsi informazioni sul tumori Desmoide o Fibromatosi agressiva
  19. Italy: Trust Paola Gonzato-Rete Sarcoma Onlus
  20. Italy: Orchestra per la Vita Onlus
  21. Kenya: Henzo Kenya
  22. Macedonia: GIST Patient Group Macedonia
  23. Netherlands: Patient Platform Sarcomen
  24. Netherlands: Chordoma Foundation Europe
  25. Norway: Sarkomer Norway
  26. Poland: Stow. Pomocy Chorym Na GIST
  27. Poland: Stow. Pomocy Chorym Na Miesaki "SARCOMA"
  28. Romania: HomeCare Association
  29. South America: Alianza GIST
  30. South Africa: Campaigning for Cancer
  31. Spain: Sarcoma Patients Spanish Association/Asociación Española de Afectados por Sarcoma (AEAS)
  33. Sweden: GIST Sverige
  34. Sweden: Sarkomföreningen
  35. Switzerland: Swiss GIST Group
  36. Switzerland: Swiss Sarcoma
  37. Turkey: Genç Birikim Derneği & Youth Accumulation Association
  38. UK: GIST Cancer UK and PAWS GIST
  39. UK: Bone Cancer Research Trust
  40. UK: Guy Francis Bone Cancer Research Fund
  41. UK: Sarcoma UK
  42. UK: Desmoid Fibromatosis UK Patients & Caregivers
  43. USA: Chordoma Foundation
  44. USA: Desmoid Tumour Research Foundation
  45. USA: GSI - GIST Support International
  46. USA: Sarcoma Alliance
  47. USA: The Liddy Shriver Sarcoma Initiative
  48. USA: National Leiomyosarcoma Foundation
  49. 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 Diese E-Mail-Adresse ist vor Spambots geschützt! Zur Anzeige muss JavaScript eingeschaltet sein!. Thank you very much!