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July 2021 Newsletter of the ERN Exchange Programme 2021-2022
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“The ERN Exchange Programme was designed to share knowledge and stimulate collaboration between healthcare professionals in the European Reference Networks (ERNs). In this newsletter, we will give you an update on where we stand and provide information about the EU Digital COVID Certificate that will greatly facilitate implementation of the programme. We will also give…
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Overview of current state of the art of NMD management
Jul 22, 2021 04:00 PM in Paris delivered by J. Andoni URTIZBEREA J. Andoni URTIZBEREA, (MD, MSc), aged 62, is a French physician trained in Paris University (1983-1987) and certified both in paediatrics and PMR (physical medicine and rehabilitation). After graduating in…
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Fulcrum Therapeutics Announces Results from ReDUX4 Trial with Losmapimod in Facioscapulohumeral Muscular Dystrophy (FSHD) Demonstrating Slowed Disease Progression and Improved Function
Although the main outcome measure of the trial was not met (“Changes in DUX4-driven gene expression, which were included in the trial as an experimental biomarker endpoint, could not be demonstrated”), there are positive conclusions to draw from the trial. Based on these results, the Company plans to meet with health authorities, including the U.S.…
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ERN-RND for Rare Neurological Diseases July 2021 newsletter
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The ERN-RND July 2021 newsletter talks about the ERN-RND Annual Meeting, contains information about, webinars, courses and includes ERN-RND centres and ePAGs introduction videos and other themes of interest.
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FSHD European Trial Network (FSHD ETN) Newsletter – July 2021
The July 2021 newsletter of FSHD European Trial Network is now available. Click the link to read it. Other resources that may interest you:
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Orphanet July 2021 Newsletter "Orphanews"
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This month’s Orphanews has an editorial about “Building a better future for rare diseases: campaigns launched at European and international level“. It also announces that the ORPHAcodes: Orphanet Nomenclature Pack 2021 is now available and has news about Solve-RD, the European Project that adresses the needs of unsolved RD cases, announces the opening of…
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Institute of Myologie Newsletter #86
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The most recent newsletter from the Institute of Myologie is available. Among many other themes it talks about the success of AcadeMYo, the virtual release of the institute’s Myology Summer School 2021 with the partnership of EURO-NMD. The arrival of Prof. Fabrice Chrétien that has recently joined the teams of the Institute of Myology…
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