Collaboration is key in Sarcomas
Sarcomas are rare and are also difficult to diagnose and treat. This leads to many and varying challenges for sarcoma patients, compared with more common cancers.
Collaboration can be challenging. Partners can gain strength from finding their common ground, sharing resources and working together, which they cannot do working apart or in competition.
Patient advocacy in cooperation with experts and their medical/scientific societies can be a valuable partnership. This is more important in rarer cancers such as sarcomas. Collaboration is valuable for everyone.
SPAGN continually strives to develop collaborations with other organizations and societies for the benefit of sarcoma patients.
We work with, or are members of, the following organizations:
Rare Cancers Europe
Rare Cancers Europe (RCE) is a multi-stakeholder initiative dedicated to putting rare cancers firmly on the European policy agenda and to implementing 39 political and stakeholder recommendations. SPAEN is proud to be an active member of this valuable initiative. http://www.rarecancerseurope.org/
Networking within the patient community
SPAGN 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. SPAGN 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 (ECO PAC) http://www.ecco-org.eu/PatientsAdvocacy/Patient-advisory-committee
- Founding member of Rare Cancers Europe (RCE) http://www.rarecancerseurope.org
- Member of the European Cancer Patient Coalition (ECPC) http://www.ecpc.org
SPAGN representatives also regularly attend relevant congresses and meetings such the ESMO Sarcoma & Rare Cancers 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 and the European Cancer Organisation (ECO) meeting.