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.
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.
The 6th SPAEN Annual Conference will be held from 19 to 21 November in Paris/Chantilly (France). 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. The three days will focus on research, treatment and patient advocacy. More...
Women with gynaecological sarcoma - a rare cancer that develops in the connective tissues of the female reproductive system - face an uphill battle to access the best treatment and care for their cancer. The report highlights some major issues faced by women with gynaecological sarcoma in the UK, in particular reaching a diagnosis, accessing best care and treatment (in sarcoma specialist centres) and accessing support and information. Whilst the findings relate mainly to cancer services in England, the patient experiences and recommendations will be helpful to any patients and clinician treating women with gynaecological sarcoma throughout Europe. The report has been produced with input from patients and sarcoma clinicians.