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.
Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and the National Alliances of Patient Organisations at the national level. February 28, 2015 marks the eighth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in many other countries. On and around this day hundreds of patient organisations from more than 80 countries and regions worldwide are planning awareness-raising activities around the slogan Day-by-day, hand-in-hand.
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®).