Posts by cowic

  “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…

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…

  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…

  https://www.ejcancer.com/article/S0959-8049(19)30832-9/fulltext This paper provides an evidence-based, joint global consensus guideline approach to the management of this disease focusing on: molecular genetics, indications for an active treatment, and available systemic therapeutic options. This paper follows a one-day consensus meeting held in Milan, Italy, in June 2018 under the auspices of the European Reference Network for…

The Leiomyosarcoma research Roundtable On September 14, 2019, 35 sarcoma experts and researchers assembled at the Sylvester Cancer Center in Miami, Florida, to discuss the current status of treatment and care in leiomyosarcomas (LMS) as well as brainstorm about possible ways to approach LMS in the future. The roundtable was initiated by the US patient…

5th Bone Sarcoma Networking Meeting:What’s new in Ewing sarcoma and osteosarcoma? “Collaboration is not something that just happens, it needs to be worked on.” Jeremy Whelan, UK The 5th Bone Sarcoma Networking Meeting was held May 23/24, 2019, in Prague, Czech Republic, within the framework of the 1. Annual Meeting of the European Society for…

              Exactly 10 years ago, on April 6, 2009, the collaborative association Sarcoma Patients EuroNet (SPAEN) was formed and foundedby 11 European GIST, Desmoid and Sarcoma advocacy and support groups in Bad Nauheim/Germany.   First meeting in 2006 (left), founding of SPAEN April 6, 2009 (right)   Today, we…

Dr. Olga Husson, epidemiologist and Professor Dr. Winette van der Graaf, medical oncologist, aim to develop an instrument to assess health-related quality of life among sarcoma patients for use in research and clinical care. Background: Information on survival only is insufficient to determine the actual benefit of a treatment. Therefore, it is important to assess…

A sarcoma is a cancer which starts in soft tissues such as muscles, joints, fat, nerves or blood vessels (among others) or in the bones. Sarcomas are very rare: They account for only approx. 1% of all cancer diagnoses in adults. What makes them so special is the fact, that sarcomas can arise basically anywhere…

NEW HORIZONS GIST is the most important global annual conference for GIST patient advocates: GIST patient advocates from the global GIST patient community come together, interact with top GIST experts, have access to state‐of‐the‐art medical and scientific information and can exchange best practice in patient advocacy among each other. The 2018 conference took place in…