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  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…

  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…

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…

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…

  “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…

Our friends at the Chordoma Foundation have recently announced a new funding opportunity aimed at accelerating the development of drug therapies targeting brachyury, a transcription factor that plays a key role in chordoma and other cancers. Issued in partnership with The Mark Foundation for Cancer Research, the Therapeutic Innovation Award will be offered in two phases. The first funding phase will…

  WECAN has launched the “Virtual Meeting Resource Center“, which provides a set of guides, instructions, check lists and templates which should help patient advocates to run successful virtual meetings, general assemblies, webinars, online brainstorming meetings – as the situation on face-to-face meetings is not likely to change in the near future. WECAN has compiled…

    The University of Milan and ESO European School of Oncology (both associated partners in EURACAN) have launched a programme of postgraduate courses on rare adult solid cancers for clinical oncologists. The course on sarcomas was held from 22 to 26 January 2018 and addresses adult-type soft tissue sarcomas, bone and pediatric sarcomas, GIST…

    As leiomyosarcoma patients are challenged by the development of metastatic disease, effective systemic therapies are the cornerstone of outcome. However, the overall activity of the currently available conventional systemic treatments and the prognosis of patients with advanced or metastatic disease are still poor, making the treatment of this patient group challenging. Therefore, in…