FSHD European Trial Network (FSHD ETN) Newsletter 2 – January 2022

January 7, 2022 By Bine Haase


FSHD European Trial Network

The FSHD ETN wishes you a very healthy and inspiring 2022! We are very pleased with the steps taken and look forward to strengthen our collaboration in 2022!

We here give you a short update on our activities and plans

  • We aim to have open membership, including active and associate members. You might be contacted by clinicians or researchers in your country. You can refer them to Nicol Voermans.
  • Enrico Bugiardini (UK) and Valeria Sansone co-chair the FSHD Taskforce in TREAT NMD. TREAT-NMD is focusing on the harmonisation of registries worldwide, in assessing the available FSHD diagnostic and therapeutic services, in extending the network of experts and on training for professionals.
    For training, TREAT-NMD aims to collaborate with the FSHD Society who has organized a masterclass:
    You can sign up for the TREAT-NMD newsletter here: https://treat-nmd.org/news-events/newsletter-signup/
  • FSHD ETN together with FSHD Society is preparing an update of the international standard of care. This review will be submitted in the second quarter of 2022.
  • FSHD Europe has received 40.000 euro from pharmaceutical companies to support the FSHD Patient Survey which will be directed by Megan McNiff (UK) and Jordi Diaz Manera (UK).

Best wishes,
The FSHD ETN Executive committee
Teresinha Evangelista, Pascal Laforêt, Alexander Mejat,

María Vriens – Muñoz Bravo, Valeria Sansone and Nicol Voermans