FSHD European Trial Network Newsletter 4 – February 2024 Dear all,The FSHD ETN hopes that you have made a good start of 2024!! We are very pleased with the steps already taken and work that has been done, here we give you a short update on our activities and plans for this year. Update of […]
While FSHD patients wait for new drugs to slow the progression of muscle weakness, Dr. Voermans emphasizes that there are many interventions already that can have a significant positive benefit. She encourages everyone with FSHD to do what they can to be as healthy and “trial fit” as possible. Dr. Voermans is Professor of Muscular […]
At the beginning of December the Global Taskforce Meeting of Project Mercury took place in Boston in the US. Representing FSHD Europe Kees van der Graaf was one of the 20 participants attending the meeting in person, among them also Miriam Wagner-Long, the liaison and project manager for all European countries and as one of […]
FSHD Society‘s regular webinar series “FSHD University” welcomes Megan McNiff from the John Walton Muscular Dystrophy Research Centre at Newcastle University (UK) in next Thursday‘s event, who will give a presentation on the FSHD European Patient Survey and answer questions afterwards.If you are interested, you can register hereFSHD University – FSHD Experiences: Insights from Europe24 […]
FSHD Europe and the FSHD European Trial Network is pleased to be a part of Project Mercury – a global collaboration seeking to speed the delivery of treatments to people living with FSHD. Within Europe this will mean: Taken together this will mean more European patients involved in more clinical trials in different European countries, […]
It’s RareDiseaseDay and FSHD Europe is happy to announce, that the FSHD European Patient Survey lay report is published and can be found along a few other informations here! Thanks to over 1.000 participants from over 26 countries in Europe it was a big success and should help hugely in the development of future clinical […]
We’ve made a profile picture frame for the upcoming World FSHD Day that anyone who wants to participate can use to “beautify” their profile picture on Facebook, Twitter, Instagram, LinkedIn and other social media platforms and hopefully raise awareness about FSHD and people living with this rare condition. Here are the instructions:1. click on this […]