Sarcoma Patients EuroNet (SPAEN), the International Network of Sarcoma, GIST and Desmoid Patient Advocacy Groups was founded in April 2009. The organisation was born from a very strong desire among various national patient groups to network, cooperate and share materials, knowledge and experiences. Acting in partnership with clinical sarcoma experts, scientific researchers, pharmaceutical industry and other stakeholders, SPAEN is working to support sarcoma research and to improve the diagnosis, treatment and care of sarcoma patients through improving information and support and by increasing the visibility of sarcoma with policymakers and the public.
SPAEN is an international association, legally registered under German law. The network of currently 41 patient groups collaborates closely with international societies, networks or organisations such as ESMO, EORTC, EMSOS, CTOS, SARC, World Sarcoma Network, EMA or Rare Cancers Europe. SPAEN also seeks exchange and close collaboration with currently 20 international cancer patient advocacy networks representing other cancer diagnoses.