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…
August 20, 2021
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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…
ERN-RND for Rare Neurological Diseases July 2021 newsletter
The ERN-RND July 2021 newsletter talks about the ERN-RND Annual Meeting, contains information about, webinars,…