Uncategorized-EN
Copyright / 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 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…
Read MoreChrodoma Foundation: The Therapeutic Innovation Award
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…
Read MoreWECAN launches “Virtual Meeting Resource Center”
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…
Read MoreNEW HORIZONS GIST 2016. Conference Report available.
ESO Post-graduate Course on Sarcomas – Webcast available
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…
Read MoreLeiomyosarcoma Position Paper published!
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…
Read More