Why is it so important to collaborate?
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 with differing priorities and interests can gain strength from finding their common ground, sharing resources and working together, which they cannot do working apart or in competition.
Consequently, patient advocacy has an important role, most especially in cooperation with experts and their medical/scientific societies. This is more important in rarer cancers such as sarcomas. Collaboration is valuable for everyone, especially patients.
Our most recent collaboration with CTOS
In collaboration with CTOS, we focus on:
- Identifying problems, challenges, and unmet medical needs in sarcoma management, helping find solutions to improve the situation in collaboration with all relevant stakeholders.
- Raising awareness for sarcomas in order to facilitate early diagnosis.
- Supporting and strengthening treatment by specialist teams using consensus guidelines.
- Delivering research that is adequately funded, coordinated and patient-centric.
In the context of the CTOS Annual Meeting 2021, we will be holding a joint roundtable meeting on "Global Patient Involvement in Sarcoma Care".*
Representatives of CTOS/experts & SPAEN/selected and experienced patient advocates will discuss on gaps and challenges in sarcoma care and management from PAGs’ and experts’ perspective. We will develop a joint expert-patient (advcoate)-publication highlighting and explaining gaps and challenges and how to overcome them together as well as a priority list of projects/deliverables to be worked on together over the next 5 years.
Host of the meeting will be Professor Dr. Bernd Kasper, Germany on behalf of the CTOS Board as well as SPAEN on behalf of the global patient community.
*Please note that seats are limited and therefore participation is per invitation only.
With whom we work
SPAEN continually strives to develop collaborations with other organisations and societies for the benefit of sarcoma patients.
We work with, or are members of, the following organisations:
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
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.