Posts by cowic

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…

Cancer patients know and have experienced that it can be not only helpful, but truly empowering to be part of patient community such as SPAEN. We would like to spread this inspiring and motivating feeling among other patients out there, living with the diagnosis of sarcoma. SPAEN therefore plans to create and publish a book…

  “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…

Guides for Patients are designed to assist patients, their relatives and caregivers to better understand the nature of different types of cancer and evaluate the best available treatment choices. ESMO Bone Sarcoma Guide for Patients  

The EURO EWING Consortium (EEC) is a collaborative project involving 20 European partners and is funded through European Union’s Framework Programme 7 (FP7). It brings together the most active clinicians and scientists in Europe dedicated to improving survival from Ewing sarcoma. What is Ewing sarcoma? Ewing sarcomas are fatal, rare bone cancers particularly affecting young…

  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…

SPAEN Policy Paper on “Quality Care in Sarcomas” This paper has been prepared in response to the growing number of requests for sarcoma patient views on such matters as expert treatment centres,  reference centres, rare cancer protocols etc.  Our objective with this paper is to give a clear statement of what we expect sarcoma treatment…

    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…

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…