Sarcoma Patients EuroNet Association (SPAEN), the European Network of Sarcoma, GIST and Desmoid Patient Advocacy Groups, was founded in April 2009 with the aim of extending information services, patient support and advocacy to patient organisations for the benefit of sarcoma patients across the whole of Europe. Acting in partnership with clinical experts, scientific researchers, industry and other stakeholders SPAEN is working to improve the 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.
SPAEN: A Better Future For Patients With A Rare Cancer! Read more about the Network.
30 July 2014 - The oncology compound Stivarga® (Regorafenib) from Bayer has been approved by the European Commission (EC) for the treatment of adult patients with unresectable or metastatic GIST (gastrointestinal stromal tumours) who progressed on or are intolerant to prior treatment with Imatinib (Glivec®) and Sunitinib (Sutent®).
Further to the launch of the Paediatric, Adolescent, Wild-type and Syndromic GIST clinic at Addenbrookes Hospital Cambridge UK, earlier this year the second clinic happened in early August. The second clinic involved seven female patients, x5 in the range 16 -25 and x2 aged 25 plus, from a variety of UK locations.
SPAEN is delighted to provide a comprehensive report of the ASCO 2014 medical highlights in GIST and Sarcomas from Dr Axel Le Cesne, Gustave Roussy Institute, Villejuif (France). Sarcomas and GIST were presented at five plenary and parallel sessions. These were rich in terms of innovation and therapeutic concepts, reporting study results that may have an impact on our daily practice, whether in GIST or sarcomas.
Paralympic champion Richard Whitehead MBE launches Sarcoma Awareness Week by calling on Britons to seek immediate medical advice if they find a lump larger than a golf ball. The campaign marks the beginning of annual Sarcoma Awareness Week (23-29 June) and calls on anyone who discovers a lump on their body larger than a golf ball (roughly 5cm across) to seek immediate medical advice.
The previous SPAEN Annual Conferences were very well attended with over 90 participants from almost 25 countries covering patient advocates, medical experts/researchers and the health industry. For the sarcoma patient community the SPAEN conference is a valuable plattform with an opportunity to learn about advances and challenges in the treatment of sarcomas/GIST and to share experience and best practice. Registration for the 5th SPAEN Annual Conference this year is now open! Read more...
New Horizons GIST 2014: GIST-Patient Group Leaders from around the globe - welcomed 2014 in Switzerland…
Eighty six delegates from around the world attended the annual conference New Horizons GIST held from May 14 – 17, 2014 in Rüschlikon/Switzerland. This year, the Swiss GIST-Patient Group, represented by Helga Meier and Martin Wettstein, hosted this annual conference for GIST-Patient Group Leaders. The Swiss organizing team was supported by Das Lebenshaus e.V. in Germany and Sarcoma Patients EuroNet e.V.
SPAEN is collaborating in the EuroEwing project that involves 20 European partners in Europe. Ewing Sarcomas (ES) are rare bone cancers affecting young people in particular. The goal of the EuroEwing project is to improve the treatment outcomes for patients through a new and unique level of European collaboration, involving the most active clinicians and scientists in Europe dedicated to improving survival from Ewing Sarcoma. SPAEN's aim at the moment is to identify all bone sarcoma patient organisations that work in Europe and to create an online database mapping the patient organizations collected. The database aims at providing all sufferers of bone sarcoma with an accessible and centralized tool for locating support and information.
28th of February marks Rare Disease Day: Joining together for better care for rare diseases and rare cancers
28th of February marks Rare Disease Day, an annual, awareness-raising event co-ordinated by EURORDIS at the international level and by National Alliances and Patient Organisations at national levels. SPAEN would like to be a part of the Rare Disease Day momentum by advocating at the European level to improve the lives of people living with rare cancers like sarcomas, GIST, Desmoids or Chordomas.