As it is Rare Disease Day, we are very proud to announce that FSHD Europe has established the FSHD European Trial Network in close collaboration with a group of great experts led by Nicol Voermans (Radboudumc, Nijmegen) and Pascal Laforet (Hôpital Pitié-Salpêtrière, Paris). More information coming soon.
by Sylvie Genet and Bine Haase The FSHD Society organised a few scientific as well as patient-oriented events from the end of June to the beginning of July. Due to the global situation caused by the Covid-19 pandemic, these conferences could not take place in Washington D.C. as originally planned and were converted to a […]
fshdsociety.org/2020/03/10/fshd-and-covid-19/ Here are a few tips for people with neuromuscular diseases and what you may need to consider nationally (available in many different languages): https://www.enmc.org/covid-19-and-people-with-neuromuscular-disorders/
Dutch Guidelines of Care for FSHD patients and their families Take note:The following text offers a direct translation of the Dutch guidelines for care for FSHD patients and their families. The topics for these guidelines and the questions they raised were identified by a panel of patients, patient representatives and medical experts on the management […]
(June 18th, Marseille, France) A European Patient Perspective The conference was sponsored by the FSH Society and jointly organized with FSHD Europe. It was attended by 38 delegates from Brazil, China, France, Germany, Italy, Israel, Japan, the Netherlands, Spain, UK and the USA. More than half of the delegates were patients and family members, some […]
(June 8-10, Las Vegas, USA) The FSH Society meeting in Las Vegas this year consisted of two separate meetings: International Research Congress & Research Planning June 8-9th (mainly for doctors and researchers) The FSH Society’s International Network Meeting for FSHD Families, Clinicians, and Researchers (mainly for patients and their families) The conference was attended by […]
By Fabiola M. Bertinotti & Bine Haase, Board members of FSHD EUROPE. It is somewhat difficult to substantiate in a few lines what we think and can feedback about EURORDIS per se and the Summer School we attended in Barcelona from June 11 through 15. Nevertheless, we will try to contain our enthusiasm, streamline our […]
(May 16-19, Moscow, Russia) Attendees: round 200 professionals, mostly doctors, but also researchers, representatives of pharmaceutical companies and patients organizations. In April 2018 I got an unexpected invitation to make a presentation about FSHD for a group of (mainly) Russian doctors during a Myology Course that was going to take place in Moscow in May. […]