Rare Diseases Day 2021
Rare Disease Day 2021 will take place on Sunday 28th February and around the world many awareness raising events…
February 22, 2021
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ERN Euro-NMD Expert Group for Guidelines Development
The European Commission has started a Project that involves Euro-NMD for developing Guidelines for Neuromuscular…
World Duchenne Organization, together with the Duchenne Data Foundation, started their Duchenne Emergency & Capacity Building Program
The Duchenne Emergency & Capacity Building Program was set up by the World Duchenne Organization and…
IRDiRC announcement of two new Task Forces
The International Rare Diseases Research Consortium (IRDiRC) has announced the opening of two new Task Forces:…
EJP-RD project’s 3rd Call for Research Training Workshops is now open
The EJP-RD project’s 3rd Call for Research Training Workshops is now open (27. January-7. March…
Survey on patients organisations’ knowledge and position paper on screening for inherited neuromuscular diseases in Europe
A new Euro-NMD publication is now available preprint on The Orphanet Journal of Rare Diseases…
Coordinator’s Message and Season’s Greetings
Despite the extraordinary circumstances of 2020, Euro-NMD has consolidated as a network for neuromuscular disorders.…
WMS25 Virtual Congress
The 25th International Congress of the World Muscle Society will be held virtually, a first…
Patient centered and interoperable registry hub for Rare Neuromuscular Diseases
Friday June 26 – Today, over 20 project partners from 7 organizations participated in the…
Virtual coffee with patient organisations and Share4Rare
Research is at the heart of solutions for all patients. However, it is not always…
AFM – COVID-19 Guidelines Available
L’AFM-Téléthon, Association de Patients Française, et FILNEMUS , la Filière Neuromusculaire Française have developed a…
The position of neuromuscular patients in Shared-Decision-Making
ENMC highlights workshop report In 2018, ENMC held a special workshop on how to involve…