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Desmoid-type fibromatosis (DF) is a rare and locally aggressive monoclonal, fibroblastic proliferation characterized by a variable and often unpredictable clinical course. Currently, there is no established or evidence-based treatment approach available for this disease. Therefore, in 2015 the European Desmoid Working Group published a position paper giving recommendations on the treatment of Desmoids. Here, we…

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 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…

  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…

Desmoid-type fibromatosis (DF) is a rare and locally aggressive monoclonal, fibroblastic proliferation characterized by a variable and often unpredictable clinical course. Currently, there is no established or evidence-based treatment approach available for this disease. Therefore, in 2015 the European Desmoid Working Group published a pdf position paper giving recommendations on the treatment of Desmoids (1.59…

  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…

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…

  https://www.ejcancer.com/article/S0959-8049(19)30832-9/fulltext This paper provides an evidence-based, joint global consensus guideline approach to the management of this disease focusing on: molecular genetics, indications for an active treatment, and available systemic therapeutic options. This paper follows a one-day consensus meeting held in Milan, Italy, in June 2018 under the auspices of the European Reference Network for…