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For Those Affected By Sarcomas!

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SPAEN at a glance

The collaborative association Sarcoma Patients EuroNet (SPAEN) was formed and founded by 11 European GIST, Desmoid and Sarcoma advocacy and support groups April 6th, 2009 in Bad Nauheim/Germany. In close collaboration with experts, the healthcare industry and other stakeholders, SPAEN is working towards improving treatment and care for GIST, Desmoid and sarcoma patients by providing information and support and increasing the visibility of sarcomas with policymakers and the public.

To achieve this, SPAEN has taken several steps: It established a Medical Advisory Board with the leading European experts in GIST, Sarcomas and Desmoids. It also supports international projects as well as advocacy and expert groups who share the same ideas and visions: Improving the treatment of rare cancers. SPAEN in turn is supported by leading “European Sarcoma Experts (Expert Groups)” and the pan-European collaboration of sarcoma specialist researchers and doctors, Conticanet.

Our Objectives

  • Identify problems, challenges, access issues and unmet medical needs in sarcomas. Find solutions and improve the situation by collaborating with leading sarcoma experts, researchers, industry and other relevant international stakeholders/initiatives in an outcome-oriented way.
  • Sarcoma patients need timely and accurate diagnosis and need to be treated according to guidelines; ideally as early as possible in multidisciplinary sarcoma expert centres. SPAEN advocates and supports the implementation of these structures and pan-European collaboration between these centres.
  • Clinical research, studies and generating evidence/data are essential parts of the process of developing better and innovative treatment solutions. SPAEN aims to be involved as early as possible in clinical trials, to try to improve patient’s access to studies and to support meaningful research – following the specific needs of rare cancer patients.
  • Sarcoma patients and their relatives need a strong “United Sarcoma Patient Voice” and strong “National Patient Support Opportunities”. That’s why SPAEN cares for their members – the existing national patient organisations and encourages the creation of new ones.

Our Vision

All Sarcoma (incl. GIST) Patients in Europe and internationally have access

  • to timely and correct diagnosis,
  • to information about their specific sarcoma-subtype
  • to treatment and care in specialised centres and
  • to innovative treatment options incl. clinical trials.

Our Mission

Improving the situation of Sarcoma (GIST) Patients and their relatives in Europe.
By

  • building one strong International Sarcoma Voice
  • cooperating with all relevant international stakeholders
  • in an outcome-oriented way and
  • strengthening this international coalition of national Sarcoma-, GIST- and Desmoid Patient Advocacy- and Support Groups

Our 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

Our Founding Members

Switzerland  GIST-Gruppe Schweiz
Germany  sos-desmoid.de
Germany  Das Lebenshaus e.V. GIST, Sarkome
France  AFPG - Ensemble Contre le GIST / Info Sarcome
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


SPAEN is legally registered under German law. Membership is open to patient groups working with sarcoma patients across Europe and internationally.