SPAEN is involved in a number of advocacy activities from raising public awareness of the challenges of sarcomas to advocating for equal access to promising new therapies to encouraging the establishment of sarcoma patient organizations in countries where they don’t yet exist. SPAEN representatives therefore sit on a range of advisory boards, committees and initiatives focused on improving outcomes for sarcoma patients and helping to improve, support and information.
These activities include:
- WECAN: 21 International/European Networks, founded in Vienna in Sept. 2015 http://www.wecanadvocate.eu/
- Member of European Society of Medical Oncology Patient Advocacy Working Group (ESMO PAWG) http://www.esmo.org
- Member of European CanCer Organsiation Patient Advocacy Committee (ECCO PAC) http://www.ecco-org.eu/PatientsAdvocacy/Patient-advisory-committee
- ESO Masterclass “Leadership in Patient Advocacy” – every two years http://www.eso.net/
- Founding member of Rare Cancers Europe (RCE) http://www.rarecancerseurope.org
- Member of the European Cancer Patient Coalition (ECPC) http://www.ecpc.org
SPAEN representatives also regularly attend relevant congresses and meetings such the ESMO GIST/Sarcoma Conference, the European Musculo-Skeletal Oncology Society (EMSOS) Meeting, the European Organisation for Research and Treatment of Cancer – Soft Tissue and Bone Sarcoma Group (EORTC-STBSG) Meeting, the Connective Tissue Oncology Society (CTOS) Meeting, but also the Rare Cancers Europe Events, the American Society of Clinical Oncology (ASCO) congress, the European Society for Medical Oncology (ESMO) congress, the European CanCer Organisation (ECCO) meeting and the Union internationale contre le cancer (UICC) World Cancer Congress.