Posts by cowic

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…

    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…

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…

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…

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…

  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…

A sarcoma is a cancer which starts in soft tissues such as muscles, joints, fat, nerves or blood vessels (among others) or in the bones. Sarcomas are very rare: They account for only approx. 1% of all cancer diagnoses in adults. What makes them so special is the fact, that sarcomas can arise basically anywhere…

Dr. Olga Husson, epidemiologist and Professor Dr. Winette van der Graaf, medical oncologist, aim to develop an instrument to assess health-related quality of life among sarcoma patients for use in research and clinical care. Background: Information on survival only is insufficient to determine the actual benefit of a treatment. Therefore, it is important to assess…

              Exactly 10 years ago, on April 6, 2009, the collaborative association Sarcoma Patients EuroNet (SPAEN) was formed and foundedby 11 European GIST, Desmoid and Sarcoma advocacy and support groups in Bad Nauheim/Germany.   First meeting in 2006 (left), founding of SPAEN April 6, 2009 (right)   Today, we…