- 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.
Improving the situation of Sarcoma (GIST) Patients and their relatives in Europe.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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
|Germany||Das Lebenshaus e.V. GIST, Sarkome|
|France||AFPG - Ensemble Contre le GIST / Info Sarcomes|
|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|
Please see the SPAEN Constitution