Author: Bine Haase

Rare Disease Day – February 28, 2021

February 27, 2021 By Bine Haase

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.

Dutch Guidelines of Care for FSHD patients and their families

December 12, 2019 By Bine Haase

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 […]

FSHD International Patient Advocacy Summit

December 12, 2019 By Bine Haase

 (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

December 12, 2019 By Bine Haase

 (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 […]


December 12, 2019 By Bine Haase

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

December 12, 2019 By Bine Haase

 (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. […]

I have always been a very lucky person

December 12, 2019 By Bine Haase

By: Diana van der Meij-Kim I have always been a very lucky person. Everything was working out in my life just fine, without much effort on my side. I finished the school with honors and was admitted in one of the most prestigious  universities of Moscow. After graduation I got a great job at the TV station […]

We will make it

December 12, 2019 By Bine Haase

By: Jaya Alberto Motta  My name is Jaya Alberto Motta and I was born in Nepal in 2000. When I was only 3 years old, I was adopted by an Italian family and since then I have lived in Italy. I am a boy affected with FSHD and for this reason, momentarily, for the last 7 […]