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Soft Tissue Sarcomas
Adult soft tissue and visceral sarcomas (excluding gastrointestinal stromal tumour) are rare tumours: Only 4–5 people out of 100 000 are diagnosed with STS per year in Europe. Overall, men have a slightly higher risk for STS than women and diagnosis occurs more frequently in patients >55 years, with the mean age at diagnosis being…
Read MoreCopyright / Disclaimer
Legal Disclaimer: The maintainers of this website have no medical qualifications and the information contained on this site is not intended to replace expert medical advice that you may be given. We do our best to ensure that any information we publish is accurate and strongly advise that any decisions about your treatment should be…
Read MoreScientific Board
Sarcoma Patients EuroNet established a Scientific Board with a high level of scientific expertise with the following objectives: Support SPAEN in: gaining legitimacy within the European and International community of experts involved in Sarcoma, GIST and desmoïd tumours; ensuring patient representation and integration in major scientific committees and groups of experts at a national and…
Read MoreSPAEN Statutes
SPAEN is an international network of soft tissue sarcoma, bone cancer, GIST and desmoid patient advocacy groups. The association is working to support sarcoma research and to improve diagnosis, treatment and care of sarcoma patients in close collaboration with clinical sarcoma experts, scientific researchers, pharmaceutical industry and other stakeholders. SPAEN is registered as an association…
Read MoreUpdate on the management of sporadic desmoid-type fibromatosis
Desmoid-type fibromatosis (DF) is a rare and locally aggressive monoclonal, fibroblastic proliferation characterized by a variable and often unpredictable clinical course. Currently, there is no established or evidence-based treatment approach available for this disease. Therefore, in 2015 the European Desmoid Working Group published a pdf position paper giving recommendations on the treatment of Desmoids (1.59…
Read MoreFostering Age Inclusive Research: The Accelerate Working Group
SPAEN supports the Accelerate Working Group Research into teenage and young adult cancers has made slower progress than for any other age group. One reason is that many clinical trials exclude patients under eighteen on the basis of age alone, with no other justification. Many of these cancers are sarcomas. SPAEN…
Read MoreSPAEN Annual Conference Report 2016 (2)
In September 2016, the community of patient advocates for sarcomas, GIST and desmoids came together for another successful SPAEN Annual Conference, with Poland being a warm and welcoming host country. We’d like to take the opportunity to thank all those who contributed: our committed patient advocates and experts and our partners from the industry. The…
Read MoreFDA approval for Ripretinib in fourth-line GIST
The company Deciphera Pharmaceuticals announced on May 15 that the U.S. FDA has approved Ripretinib (brandname Quinlock™) for the treatment of adult patients with advanced Gastrointestinal Stromal Tumor (GIST) who have received prior treatment with 3 or more kinase inhibitors, including Imatinib. “Today’s approval of Ripretinib establishes a new standard of care for patients who…
Read MoreHarvesting Patient-generated information from internet discussion forums
CTOS, November 2017 During the CTOS (Connective Tissue Oncology Society) 2017 conference in Maui, Hawaii, SPAEN Board member and Chairman of the Dutch sarcoma patient platform Gerard van Oortmerssen gave a presentation on a project aiming at harvesting information from patient discussions on the Internet. Cancer patients, in particular patients with rare cancers, are increasingly…
Read MoreDr. George D. Demetri Receives the 2020 David A. Karnofsky Memorial Award
“On behalf of SPAEN, our member organizations and all GIST- and Sarcoma patients, we congratulate Prof. Demetri on this so well-deserved award. We thank Dr. Demetri for his tireless research efforts in a rare group of diseases such as GIST and Sarcomas. Thanks also for his continued support to our patients and his engaged…
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