ļæ¼Blog & News
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 stateāofātheāart 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 stateāofātheāart 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…
ESO Post-graduate Course on Sarcomas – Webcast available
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…
Chrodoma Foundation: The Therapeutic Innovation Award
Our friends at the Chordoma Foundation have recently announced a new funding opportunity aimed at accelerating the development of drug therapies targeting brachyury, a transcription factor that plays a key role in chordoma and other cancers. Issued in partnership with The Mark Foundation for Cancer Research,…
Harvesting Patient-generated information from internet discussion forums
CTOS, November 2017 During the CTOS (Connective Tissue Oncology Society) 2017 conference in Maui, Hawaii, SPAEN Board member and Chairman of the Dutch sarcoma patient platform Gerard van Oortmerssen gave a presentation on a project aiming at harvesting information from patient discussions…