Dear Members, Readers and Friends of ERN Euro-NMD,

We have all lived a very difficult year in an uncertain sanitary context, but we would like to wish you a very Happy New Year 2022.

We have several upcoming projects and we are looking forward to sharing them with you. We would also like to welcome to ERN Euro-NMD our 19 new HCP members from 10 European countries. We look forward to exchanging and working together on the many ERN projects.  Our objectives remain the same, to develop our clinical and scientific resources on rare neuromuscular diseases.

The ERN Euro-NMD now brings together neuromuscular experts from 84 Healthcare Centres in 25 European countries and a high number of very active patient organisations.
Neuromuscular diseases affect around 500,000 EU citizens and cause significant costs to families and the health system. More than 150,000 patients with neuromuscular diseases are seen each year by the ERN. We hope that the actions of the ERN will help to mitigate the existing gaps in the care of patients with neuromuscular diseases.

Finally, we want to thank everyone whose hard work contributed to make 2021 a successful year for Euro-NMD. We hope that 2022 will also be a year of progress in the fight for rare neuromuscular disease patients.

Teresinha Evangelista – EURO-NMD Coordinator

The ERN Euro-NMD coordination team would like to welcome again our new members. We hope our new relationship will be a successful one and we look forward to working with you all. We would also like to thank you all for your participation in the Annual ERN Euro-NMD Board Meeting. Your centres were very well represented and it is also thanks to you that this board meeting took place. We sincerely hope that the next Board Meeting can be organized in person. 

The ERN EURO-NMD Bi-Annual Board Meeting was held online on January 24th and 25th, 2022. It was a very successful event with around 120 participants over the two days! All Full Members and Affiliated Partners of ERN Euro-NMD were invited. Further attendees were the representatives of the Patient Advisory Board and the members of the Executive Committee.  We kindly remind our members that the attendance of the board meeting is mandatory and at least one person must represent the HCP. We had the opportunity to present and discuss the different projects and the future of the ERN. The different working group chairs presented a summary of their group's past work and their vision for the future.

UPCOMING Euro-NMD 2022  WEBINARS

FEBRUARY 2022 - #MitochondrialMonth 👉 Follow us on Twitter

Thursday Feb 3rd – 16:00-17:00 Paris time

"An introduction into mitochondrial diseases in adulthood" Delivered by Cornelia Kornblum, Senior Neurologist and head of the neuromuscular group of the University Hospital Bonn.

Thursday Feb 24th – 16:00-17:00 Paris time

"Targeted Therapies for Leigh Syndrome: Systematic Review and Steps Towards a “Treatabolome” Delivered by Rita Horvath Director of Research (Clinical) at the Department of Clinical Neurosciences, University of Cambridge.

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 1 February 2022, 3-4pm CET

Learning by example: HD-JUNIOR a national registry for patients with juvenile onset Huntington's Disease by Hannah Bakels
The speaker works as a research physician and PhD-candidate at the Neurology and Human Genetics department of the Leiden University Medical Center. 

Tuesday 8 February 2022, 3-4pm CET

The overlap between the spectrum of frontotemporal dementias and atypical Parkinsonism by Vasilios Constantinides
The speaker is a Neurologist at the National and Kapodistrian University of Athens, Greece.

Tuesday 15 February 2022, 4-5pm CET

New MDS criteria for clinical diagnosis of MSA by Gregor Wenning and Iva Stankovic. This webinar will have two parts, one on 'MDS criteria for diagnosis of MSA' to be presented by Gregor Wenning who is Professor and Head of the Division of Clinical Neurobiology at the Medical University Innsbruck. He is also a Co-Founding Director and Coordinator of the European MSA Study Group (www.emsa-sg.org). The other part entitled 'Introduction and critique of the Gilman criteria' will be presented by Iva Stankovic, a Neurologist at the Institute of Neurology, University of Belgrade, Serbia.

The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond.
The contest is open to all nationalities, ages, and diseases. Every year, hundreds of people from all around the world submit their photos, each reflecting the drive of people living with a rare disease.

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

Every year, Eurordis, the European Federation of Rare Disease Organizations, coordinates Rare Disease Day – the International Day for Rare Diseases – on the last day of February !

In 2022, the 15th edition takes place on Monday 28 February.

Rare Disease Day is the globally-coordinated movement on rare diseases, working…

The European Commission (EC), the Heads of Medicines Agencies (HMA) and the European Medicines Agency (EMA) are coming together to optimise the environment for clinical research in Europe by launching Accelerating Clinical Trials in the EU (ACT EU).
This initiative will use the momentum created by the implementation of the Clinical Trials Regulation and the…