SPAEN brings its objectives to life - primarily the improvement of diagnosis, treatment and care for sarcoma patients – in different special projects with varying focus.
Patient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. We decided that it is time to shout out about how important patient advocacy in sarcomas is - for patients, caregivers, healthcare professionals or anyone interested in sarcomas.
We are very happy to have received submissions of outstanding projects and initiatives for our SPAEN Advocacy in Action Award 2017.
The best projects have been awarded by a jury of 8 members consisting of patient advocates and experts. Those projects are:
- Friends of Max, India: Together We Share and Learn - Ongoing life-long relationship management of GIST patients & caregivers
- Polish Sarcoma Patients Association, Poland: ONCORUN - Together for health!
- Associazione Paola, Italy: 1. Paper on sarcoma/rare cancer health policies, 2. Sarcoma meeting for healthcare professionals and policy makers, 3. Funding Ewing sarcoma research (travel scholarship 2017/2018), 4. Lobbying in order to relax the rules for the “compassionate use” in rare cancers
Read more here...
New Horizons GIST
For several years now, NEW HORIZONS GIST is the most important global annual conference for GIST patient advocates. At NEW HORIZONS GIST, patients from the global GIST patient community come together, can interact with top GIST experts, have access to state‐of‐the‐art medical and scientific information and can exchange best practice in patient advocacy among each other. The conference is a balanced symbiosis of medical content, advocacy topics and capacity building sessions. It is held every year and organised by either American Groups (The Life Raft Group/Alianza GIST) or European Groups in cooperation with SPAEN.
NEW HORIZONS GIST 2017 was held in Wayne, New Jersey, USA from October 1-3, 2017.
NEW HORIZONS GIST 2016 was held in Sitges/Barcelona, Spain from May 18-21, 2016.
Roundtables on specific topics
In close collaboration with expert patients and the SPAEN scientific board, SPAEN identifies specific topics and brings the key players together to discuss and form a common statement or publication to address the topic and spread knowledge.
Recent roundtables were:
- Roundtable on Desmoids – outcome: Update of Desmoid Consensus Paper – published in "Annals of Oncology"
February 23, 2017 in Frankfurt, Germany
- Roundtable/Exchange in Generic Imatinib with CML Community and PD Dr. Peter Reichardt
July 15, 2015 in Munich, Germany
- Roundtable on Desmoids – outcome: Desmoid Consensus Paper – published by the European Journal of Cancer
May 8, 2014 in Frankfurt, Germany
- Roundtable on Pediatric and Wild-Type GIST
October 22, 2013 in London, UK
Mentoring and support
SPAEN supports individuals or groups of patients who plan to found a national patient organisation by giving advice and – if possible and necessary – accompanying them on their way for some time. This way, Swiss sarcoma patients founded a patient organisation “Swiss Sarcoma”. After two “Swiss Sarcoma Patient Days (April 2014 and April 2015), the official group was brought to life .
Furthermore, SPANDAN, an Indian Sarcoma Patient Group, was founded in February 2015 after approx. one year of planning, supported by SPAEN .
Voices of Courage and Hope
SPAEN currently plans to create and publish a book of individual patient stories from different countries around the world – the “Voices of Courage and Hope”. The aim of the book is to illustrate how sharing patient experiences and being part of a patient group can help improve the lives of sarcoma patients no matter where they live. By collecting and sharing those stories, SPAEN intends to inspire other patients to join their local patient group for support and information and to demonstrate how empowering it is to be part of the sarcoma patient community.
More to come!