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.
By Ornella Gonzato
The 3rd Joint ENCCA-WP7/EuroSarc/EEC/PROVABES/EURAMOS European Bone Sarcoma Network Meeting held in Vienna, on 24-25 September 2015, titled "Integration of clinical trials with tumor biology" brought together preclinical and clinical bone sarcoma investigators and experts. The meeting was organized by Stefan Bielack, Bass Hassan, Jeremy Whelan and Uta Dirksen.
The purpose of the meeting was to update the achievements and current status of biological and translational research and clinical trials in bone sarcomas, both osteosarcoma and EwingSarcoma, and to stimulate crosstalk.
- More than 100 topics in 7 languages for patient advocates to discover, adapt and share
- Online information resource designed to enable more meaningful patient involvement
- Information and education to help engage patients and patient advocates
The European Patients’ Academy (EUPATI) announced the launch of its new online-toolbox on Medicines Research Development. The toolbox is available to European patient groups, patient advocates and anyone who is interested in learning more about the medicines research and development (RD) process. Users can acquire the knowledge to make a meaningful contribution to medicines development and to the broader dialogue around patient empowerment. This online educational resource allows users to freely discover, adapt, and share materials.
Emerging Agents for the Treatment of Advanced, Imatinib-Resistant GIST: Current Status and Future Directions
Over 80 participants from almost 20 countries who attended the 5thGIST or Desmoid-Tumours held in Amsterdam in November 2014 documented the great interest in the disease group of Sarcomas. Among the participants were more than 60 representatives from Sarcoma Patient Advocacy Groups, several European Sarcoma Experts and industry representatives. See Conference Report 2014 SPAEN Annual Conferencefor organizations representing patients with Sarcomas incl.
SPAEN is delighted to provide a comprehensive report of the ASCO 2015 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.