Vision
- A Better Future For Patients With A Rare Cancer.
- Speaking with one voice at European level, advocating and cooperating professionally and in partnership; to create a better future for Sarcoma patients and their families in every nation.
- Acting in partnership with experts, the researching industry and other stakeholders SPAEN will work to improve treatment and care of sarcoma patients in Europe through improving information and support, and by increasing the visibility of sarcoma with policymakers and the public.
Objectives
- Increasing the awareness of sarcoma (GIST, Desmoids and other sarcomas)
- Providing information and support
- Improving treatment and care
- Supporting research
- Building capacity
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
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