• A Better Future For Patients With A Rare Cancer.
  • Speaking with one voice at European level, advocating and cooperating professionally and in partnership; to create a better future for Sarcoma patients and their families in every nation.
  • Acting in partnership with experts, the researching industry and other stakeholders SPAEN will work to improve treatment and care of sarcoma patients in Europe through improving information and support, and by increasing the visibility of sarcoma with policymakers and the public.


  • Increasing the awareness of sarcoma (GIST, Desmoids and other sarcomas)
  • Providing information and support
  • Improving treatment and care
  • Supporting research
  • Building capacity

Core Values

  • Focused on the needs of the PAGs (patient advocacy groups)and the patients/caregiver
  • Willingness to advocate
  • High quality of information/education/training: Correct, up to date, understandable, independent
  • Cooperative and professional
  • Ethical, transparent, behave with integrity
  • Innovative spirit


11 Founding Members

Switzerland GIST-Gruppe Schweiz
Germany Das Lebenshaus e.V. GIST, Sarkome
France AFPG - Ensemble Contre le GIST / Info Sarcomes
France SOS Desmoids
Italy A.I.G. - Associazione Italiana GIST
Poland Stow. Pomocy Chorym Na Miesaki "SARCOMA"
Poland Stow. Pomocy Chorym Na GIST
Romania The Romanian GIST-Network
UK Sarcoma UK
UK GIST-Support UK

Please see the SPAEN Constitution


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