LGMD Awareness Day – 30th September 2021
Limb-Girdle Muscular Dystrophy (LGMD) Awareness Day is intended to be an annual collaborative effort to…
September 24, 2021
Search criteria
Read the post
New article on Journal of Neuromuscular Diseases about patient-led FAIR Data Efforts to facilitate Research and Health Care
The World Duchenne Organization and Duchenne Data Foundation have published their latest Research Article on…
ERN-RND for Rare Neurological Diseases July 2021 Newsletter
In ERN-RND July newsletter read about: ERN-RND Annual Meeting took place online on 30 June…
Treat-NMD July 2021 Newsletter
The TREAT-NMD Alliance are organising the 7th international conference focussing on translational medicine in inherited…
Training needs in rare neuromuscular diseases in Europe: an EURO-NMD Survey.
EURO-NMD is running a survey to map the training needs in rare neuromuscular diseases in…
First CPMS Grand Round: access on demand to the recording on CPMS
The First CPMS Grand Round was a success according to the feedback that we have…
Results of Survey: COVID19 Hospital Feedback
One year ago, the EURO-NMD has launched a survey for Hospitals to feedback the situation…
CPMS Grand Rounds: the first one will be on Friday 6th August 4PM-5PM Paris time
The Grand Rounds will be bi- monthly 1-hour online clinical discussion sessions of undiagnosed/complex/unusual presentations…
Feedback for 2023 webinars
The following graphs reflect the totality of answers according to people’s grading of their satisfaction…
Institute of Myologie Newsletter #86
The most recent newsletter from the Institute of Myologie is available. Among many other themes…
July 2021 Newsletter ERN Exchange Programme 2021-2022
“The ERN Exchange Programme was designed to share knowledge and stimulate collaboration between healthcare professionals…
Orphanet July 2021 Newsletter “Orphanews”
This month’s Orphanews has an editorial about “Building a better future for rare diseases: campaigns…