Blog & News
The Leiomyosarcoma Research Roundtable 2019
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…
5th Bone Sarcoma Networking Meeting: What’s new in Ewing sarcoma and osteosarcoma?
5th Bone Sarcoma Networking Meeting:What’s new in Ewing sarcoma and osteosarcoma? “Collaboration is not something that just happens, it needs to be worked on.” Jeremy Whelan, UK The 5th Bone Sarcoma Networking Meeting was held May 23/24, 2019, in Prague, Czech Republic,…
SPAEN: 10 years of joint globals forces in sarcomas
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…
Assessment of quality of life in sarcomas: Incorporating the patient voice
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…
Rare Disease Day 2019: Spot on Sarcomas!
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…
NEW HORIZONS GIST 2018 (2)
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…
Rare Disease Day – 28 February 2019
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…
The evolving role of patient advocates in rare cancers
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…
NEW HORIZONS GIST 2018 report available now!
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…
Sporadic desmoid-type fibromatosis: EURACAN/EORTC-STBSG Meeting
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…