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.
A European consensus approach for the management of desmoid based on patients’ and professionals’ expertise
In May 2014 SPAEN initiated a round table meeting bringing together medical experts, researchers and patient representatives to discuss needs and aspects of desmoid tumour treatment. During this meeting, a European consensus approach has been initialized, and on the basis of this meeting a consensus paper has been coordinated, which has now been published by the EJC as a combined SPAEN and EORTC / STBSG initiative based on patients’ and patient advocates’ and professionals’ expertise. Read more
During this year’s Annual Conference, SPAEN also held its Annual General Meeting (AGM) with elections to the SPAEN Board of Directors. The assembly confirmed that the previous Board Members should retain their places on the Board for the next 4 years and elected new members to the Board. The newly established Board will now be jointly chaired by Estelle Lecointe from France and Markus Wartenberg from Germany.
AEAS (Spanish Association for Sarcoma´s Affected) and Mª Paz Jiménez Casado Foundation, once again join its efforts to keep fighting against this rare type of cancer, organizing the 2nd Sarcoma National Day, that will be held in Madrid at 20th of September, endorsed by GEPAC, GEIS, SEMERGEN and COAM.
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.
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. For the 5th SPAEN Annual Conference again over 80 participants have registered. Read more...