Blog & News
Diagnose of a desmoid tumors at fertility age?
Project: Desmoid and fertility Who is it for and what is it about? In collaboration with IRCCS NATIONAL TUMOR INSTITUTE FOUNDATION, we are spreading a questionnaire to study the impact of a diagnosis of desmoid tumor on the lives of women during…
Sarcoma Expert new EORTC President-Elect
Professor Winette van der Graaf, The Netherlands, has been elected as new EORTC President-Elect from 2021-2024 – our heartfelt congratulations to a dedicated and enthusiastic #sarcoma expert! Read more: https://bit.ly/2TQC8o7
Study the correlation between desmoid tumors and pregnancy
In collaboration with the Fondazione IRCCS Istituto Nazionale dei Tumori, the Desmoid Foundation Italy is launching a survey to study the correlation between desmoid tumors and pregnancy. The results of this study will help to understand how desmoid tumors behave DURING pregnancy…
Advocacy in Action Award 2020: Winners announced
The winners of the SPAEN Advocacy in Action Award 2020 have been announced! We congratulate them for their fantastic work:– V Care / SPANDAN, India– The Bone Cancer Research Trust, UK– The Polish Sarcoma and Melanoma…
SOS Desmoide France: First webconference January 30
SOS Desmoide France will hold its first webconference Saturday, January 30, 2021, from 9:30 to 12:00 AM Paris time. It is free and open for everybody, patients, relatives, physicians. You will have the opportunity to hear respected experts explain how desmoid tumors…
Avapritinib approved in the EU for D842V-mutated GIST
End of September, a new therapy option for GIST patients with D842V mutation was approved for the EU: Avapritinib (Ayvakyt®) from Blueprint Medicines is a highly selective tyrosine kinase inhibitor. It is directed against the D842V mutation in exon 18, which has…
13th of July is GIST Awareness Day
13th of July is GIST Awareness Day, and SPAEN is encouraging everyone to help bring attention to GIST and other rare cancers. The theme of GIST Awareness Day this year is HOPE! 2020 brought a global health crisis that has challenged GIST…
July is Sarcoma Awareness Month
July is the month of #SarcomaAwareness! We at SPAEN fight for a better situation for sarcoma, GIST, bonecancer and desmoid patients – together with our member groups, patients & advocates, experts & healthcare professionals. Stronger together!! We are here for you! …
National patient groups around the world say “We are #HereForYou”
COVID-19 and the fact that you as cancer patients and survivors are considered a “risk group” causes a lot of uncertainties: A lot of you feel left alone with your fears and questions. However, many of our national patient advocacy groups for…
COVID-19: Information and resources
The constant news about the coronavirus can be worrying, especially for people with cancer and their families. Cancer and its treatment can lower your ability to fight infection. We have therefore put together information and resources about the coronavirus in general and especially…