Tag: #fshdeurope

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 […]