Tag: #rareDisease

FSHD Society – Webinar on the FSHD European Patient Survey

August 22, 2023 By Bine Haase

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 […]

Project Mercury launched – The Global Initiative to Speed the Delivery of Therapies for FSHD

June 23, 2023 By Bine Haase

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, […]

FSHD European Patient Survey – Lay Report published!

February 28, 2023 By Bine Haase

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 […]

20th June 2022 is World FSHD Day!

June 19, 2022 By Bine Haase

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 […]