FSHD Europe – The European Voice for People with FSHD
News
- FSHD European Trial Network (FSHD ETN) Newsletter 4 – February 2024FSHD 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… Read more: FSHD European Trial Network (FSHD ETN) Newsletter 4 – February 2024
- FSHD University webinar featuring FSHD ETN chair Dr. Nicol VoermansWhile 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… Read more: FSHD University webinar featuring FSHD ETN chair Dr. Nicol Voermans
- A big welcome to our new Project Manager!We are pleased to announce the appointment of Ria de Haas as Project Manager for bothFSHD Europe and the FSHD European Trial Network. She can be contacted at ria@fshd-europe.info
- Project Mercury – Global Taskforce Meeting 9th December 2023, Boston (USA)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… Read more: Project Mercury – Global Taskforce Meeting 9th December 2023, Boston (USA)
- FSHD Society – Webinar on the FSHD European Patient SurveyFSHD 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,… Read more: FSHD Society – Webinar on the FSHD European Patient Survey
- Project Mercury launched – The Global Initiative to Speed the Delivery of Therapies for FSHDFSHD 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… Read more: Project Mercury launched – The Global Initiative to Speed the Delivery of Therapies for FSHD
- ENMC international workshop on FSHD – reports are onlineThe report of both ENMC workshops are now available online and can be read/downloaded here:268th ENMC workshop – Genetic diagnosis, clinical classification, outcome measures, and biomarkers in Facioscapulohumeral Muscular Dystrophy (FSHD): Relevance for clinical trials – ScienceDirect 265th ENMC International Workshop: Muscle imaging in… Read more: ENMC international workshop on FSHD – reports are online
- FSHD European Trial Network (FSHD ETN) Newsletter 3 – March 2023FSHD European Trial Network Newsletter 3 – March 2023 The FSHD ETN is pleased to send you this newsletter to update you on… Read more: FSHD European Trial Network (FSHD ETN) Newsletter 3 – March 2023
- FSHD European Patient Survey – Lay Report published!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… Read more: FSHD European Patient Survey – Lay Report published!
- Genetic diagnosis, clinical classification, outcome measures, and biomarkers in Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trialsFrom 30th September-02nd October 2022 the 268th ENMC International Workshop took place in Hoofddorp, The Netherlands. The lay report is online and can be read here (🇬🇧English) and is also available for download in various other languages (🇳🇱Dutch, 🇫🇷French, 🇩🇪German, 🇪🇸Spanish).