Association

Association

Vision

All Sarcoma (incl. GIST) Patients in Europe 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.

Mission

Improving the situation of Sarcoma (GIST) Patients and their relatives in Europe.
By
- building one strong European Sarcoma Voice,
- cooperating with all relevant European stakeholders
in an outcome-oriented way and
- strengthening this European coalition of national Sarcoma-,
GIST- and Desmoid Patient Advocacy- and Support Groups.

Objectives

    1. We identify problems, challenges, access issues and unmet medical needs in sarcomas. By collaborating with leading sarcoma experts, researchers, industry and other relevant European stakeholders/ initiatives in an outcome-oriented way we find solutions and improve situations.
    2. Sarcoma Patients need to get a timely correct diagnosis and need to be treated according to guidelines; ideally as early as possible in multi-disciplinary sarcoma expert centres. We advocate and support the implementation of these structures and the pan-Europeancollaboration between these centres.
    3. Clinical research, studies and generating evidence/data are essential for better and innovative treatment solutions. We need to be involved as early as possible in clinical trials, try to improve patients access to studies and support meaningful research – following the specific needs of rare cancer patients.
    4. Sarcoma patients and their relatives need a strong “European Sarcoma Patient Voice” and strong “National Patient Support Opportunities”. That’s why we care for our members – the existing national patient organisations and the creation of new ones.

    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 sos-desmoid.de
    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

    icons-world

    Member LogIn