• Latest Research News – Events of the FSHD Society in late June/early July 2020
    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 […]
  • FSHD International Patient Advocacy Summit
     (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 […]
  • FSH Society meeting
     (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‚Äôs 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 […]
  • The Euro-Russian Myology Course
     (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. […]