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    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…

June 18, 2018, Milan, Italyby Christina Baumgarten, sos-desmoid Germany   On June, 18, 2018 we held our international desmoid meeting in Milan, Istituto Nazionale dei Tumori. It was a fantastic meeting with nearly 40 medical experts and patient advocates from all over the world. After a short welcome introduction from Bernd Kasper and Alessandro Gronchi…

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…

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…

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…

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  

EDITORIAL The evolving role of patient advocates in rare cancers: opportunities and challenges Ornella Gonzato and Alessandro GronchiAssociazione Paola for Muskulo-Skeletal Tumors Onlus, Udine, Italy;Department of Surgery, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy The role of Patient Advocates (PAs) has evolved over time. In general, it has expanded ranging from direct support to…

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…

  28 February 2019 will be the twelfth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities. The theme for Rare Disease Day 2019 is ‘Bridging health and social care‘. A rare disease, also referred to as an…