The entire Euro-NMD coordination team supports Ukraine and wishes to express its solidarity with the Ukrainian rare disease community, in particular the Ukrainian neuromuscular disease community. We want to help our colleagues, their patients and families, and all those affected by this conflict.

On February 28, 2022, at a conference on the future of rare diseases in Europe that gathered a large number of EU health ministries in Paris, ERN coordinators as well as many personalities expressed their concerns about the situation in Ukraine and the refugees, among whom are obviously people with rare diseases who will need specific care.

This situation is devastating! It goes against all the principles we stand for non-violence, solidarity, inclusion and respect.

Do not hesitate to contact us at coordination@ern-euro-nmd.eu if you need help.

Teresinha Evangelista - EURO-NMD Coordinator

The ERN has a ‘multi-tiered hub structure’ so that it can accommodate the associated and collaborative members as well as the existing research networks and the learned societies. In essence, this means that although a limited number of health care providers are members of the network, ‘non-member centres’ can be affiliated to the ERN and are able to access the expertise of the ERN, submit patients etc.

The board of the ERN is supported by thematic groups, developed around the main groups of diseases: Muscle, Neuromuscular Junction, Peripheral Nerve Diseases, Mitochondrial Neuromuscular Diseases and ALS/MND/SMA, each of them with a spokesperson. There will be cross cutting groups, for instance ‘Diagnostic Tools’ (Genetics, Pathology, Imaging and Neurophysiology) that will cover common issues of the different diseases.

These groups will report to the board and will help with the governance of the network. A secretariat, an ethics committee, an educational board and a research board will support the overall structure. It will be supervised by an external evaluation body and with the input of the Patient Advisory Board.

UPCOMING Euro-NMD 2022  WEBINARS

MARCH 2022

Thursday Mar 10th – 16:00-17:00 Paris time

"Muscle Ultrassound: a biomarker for muscle dystrophies" Delivered by Prof Nens van Alfen Professor of Neurology and clinical neurophysiologist from the Radboud university medical center (RUMC) in Nijmegen, The Netherlands.

Thursday Mar 17th – 16:00-17:00 Paris time

"Primary Mitochondrial Miopathies" Delivered by Prof. Michelangelo Mancuso. Prof. Mancuso is the Coordinator of the study group of Clinical Neurogenetics and Rare Diseases of the Italian Society of Neurology and coordinator of the Neurogenetics working group of the European Academy of Neurology.

Tuesday 8 March 2022, 3-4pm CET

Brain Development in Huntington’s Disease by Peggy Nopoulos
The speaker is Professor of Psychiatry at the Carver College of Medicine, at the University of Iowa, USA.

Tuesday 15 March 2022, 3-4pm CET

Measuring disease severity in chronic progressive myelopathy by Marc Engelen
The speaker is Pediatric Neurologist at the Amsterdam University Medical Center, the Netherlands.

Tuesday 29 March 2022, 3-4pm CEST

Antisense oligonucleotide mediated exon skipping therapy development for Duchenne muscular dystrophy takes more than an oligonucleotide by Annemieke Aartsma-Rus.
The speaker is Professor of Translational Genetics at the Department of Human Genetics at the Leiden University Medical Center, the Netherlands. She is also Co-founder and Co-leader of the Dutch Center for RNA Therapeutics (DCRT).

After the success of the previous editions, it has been decided to proceed with the fifth Day of Neuromuscular Diseases (GMN), which will be held in a virtual format. At the same time, 16 live webinars are planned, corresponding to the locations, linked to the reference centers for the above mentioned diseases. March 16th - Entirely online

Muscular Dystrophy UK will host a Muscles Matter Seminar on Congenital Muscular Dystrophy on Tuesday the 29th of March from 10am – 12pm CET.

The session will cover the latest research into congenital muscular dystrophy as well as information and advice on living well. You’ll hear from experts about progress into research and tips for managing…

AFM-Telethon is pleased to announce that it will hold its 7th International Myology Congress in person, from September 12th to 15th, 2022 at the Nice Acropolis Congress Center, followed from September 15th to 17th by mitoNice, an international congress dedicated to Mitochondrial Medicine. A joint session in the afternoon of September 15th will ensure a smooth transition between the two congresses.

👉 IMPORTANT DATES
- March 15th, end of the call for abstracts  
- May 31st, end of the early-bird rates