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End of September, a new therapy option for GIST patients with D842V mutation was approved for the EU: Avapritinib (Ayvakyt®) from Blueprint Medicines is a highly selective tyrosine kinase inhibitor. It is directed against the D842V mutation in exon 18, which has been shown to be resistant to all drugs available to date. The approval…

The constant news about the coronavirus can be worrying, especially for people with cancer and their families. Cancer and its treatment can lower your ability to fight infection. We have therefore put together information and resources about the coronavirus in general and especially for cancer patients, including specific (though very limited) information for sarcoma and GIST…

SOS Desmoide France will hold its first webconference Saturday, January 30, 2021, from 9:30 to 12:00 AM Paris time. It is free and open for everybody, patients, relatives, physicians. You will have the opportunity to hear respected experts explain how desmoid tumors are treated in France, present the research projects that SOS Desmoid decided to…

COVID-19 and the fact that you as cancer patients and survivors are considered a “risk group” causes a lot of uncertainties: A lot of you feel left alone with your fears and questions. However, many of our national patient advocacy groups for sarcoma, GIST and desmoid patients keep on providing support and information to you…

            The winners of the SPAEN Advocacy in Action Award 2020 have been announced! We congratulate them for their fantastic work:– V Care / SPANDAN, India– The Bone Cancer Research Trust, UK– The Polish Sarcoma and Melanoma Group Learn more about the winning projects, about all applications and about the…

In collaboration with the Fondazione IRCCS Istituto Nazionale dei Tumori, the Desmoid Foundation Italy is launching a survey to study the correlation between desmoid tumors and pregnancy. The results of this study will help to understand how desmoid tumors behave DURING pregnancy with the aim of improving the future of our patients who dream of…

  Professor Winette van der Graaf, The Netherlands, has been elected as new EORTC President-Elect from 2021-2024 – our heartfelt congratulations to a dedicated and enthusiastic #sarcoma expert!   Read more: https://bit.ly/2TQC8o7

Project: Desmoid and fertility Who is it for and what is it about? In collaboration with IRCCS NATIONAL TUMOR INSTITUTE FOUNDATION, we are spreading a questionnaire to study the impact of a diagnosis of desmoid tumor on the lives of women during their fertility age. The results of this study will help understand how desmoid…

European Commission Grants Lilly’s olaratumab (LARTRUVOTM), in Combination with Doxorubicin, Approval for the Treatment of Advanced Soft Tissue Sarcoma in Europe Olaratumab, in combination with doxorubicin, is the first front-line therapy approved in four decades for advanced soft tissue sarcoma in Europe JGDG study showed olaratumab, in combination with doxorubicin, offered a median 11.8-month increase…

The following table lists the results of some of the many clinical trials available worldwide for sarcoma, GIST or desmoid patients. For more information about some of the ongoing trials, click here. No Trial Name Agents Phase Status Results Sponsor 1 Study 62005 Imatinib in twodifferent dosings III Closed Results Study 62005 EORTC Note: The…