The Network

The Network

European GIST, Desmoid and Sarcoma advocacy and support groups have agreed to form the collaborative association Sarcoma Patients EuroNet. SPAEN was officially founded on the 6th of April 2009 in Bad Nauheim/Germany. 11 foundation members initiated the foundation of SPAEN and membership is open to patient groups working with sarcoma patients across Europe. SPAEN is an European association – legally registered under German law. The association has some short term goals and some long term ambitions, and is supporting the growing pressure for better treatment of rare cancers being led by groups such as RARECARE, EURORDIS, ESMO and ECPC.

The organization has already started its work with the aim of extending information services, patient support and advocacy so that patients across the whole of Europe can benefit. Acting in partnership with experts, the healthcare industry and other stakeholders, SPAEN will work to improve treatment and care of GIST, Desmoid and sarcoma patients in Europe through improving information and support, and by increasing the visibility of sarcoma with policymakers and the public.

Sarcoma Patients EuroNet e.V./Assoc. is supported by leading “European Sarcoma Experts (Expert Groups)” and the pan-European collaboration of sarcoma specialist researchers and doctors, Conticanet. SPAEN has also initiated a Medical Advisory Board.

The main SPAEN objectives are:

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

Prof. Dr. Jean Yes Blay (EORTC President and Director of Conticanet): “Sarcoma Patients EuroNet is a very welcome development. We need to involve patients in clinical trials at the design stage so that the relevance of what we do can be considered at the outset. In addition SPAEN will be valuable helping patients understand what being treated in a clinical trial could mean to them. Together we can complete research more quickly and introduce new treatments faster.”

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