The ERN EURO-NMD Coordination team is pleased to announce that the 7th ERN EURO-NMD Annual meeting will take place on 21-22-23 February 2024 at the Pitié-Salpêtrière Hospital in Paris.

Please click here to see the preliminary programme. More details on sessions and speakers will be added soon.

Registrations:

Important: if you have received a personal invitation to the meeting, please use the registration link included in the email that was sent to you. The registration form linked below is for anyone who would like to attend the annual meeting but has not received a personal invitation.

Please note that the number of participants is limited, therefore we will accept registrations on a first come, first serve basis. The exact location of the meeting venue and other details will be sent to confirmed participants.

Click here to register!

Upon receipt of the evaluation results, we are pleased to inform you that the ERN EURO-NMD project proposal has been approved for funding!

We are very happy that all the efforts we have made will be rewarded. We would like to thank all stakeholders involved in the project since the very beginning.

The final ERN EURO-NMD Grant Agreement will be made available to ERN members when finalised.

Building bridges and breaking down barriers in the field of rare neuromuscular diseases is an adventure we're eager to continue.

The Patient Advisory Board (PAB) is made up of eight European patient organisations, some of which have been elected through a process put in place by EURORDIS (ePAGs), while other umbrella patient organisations have been invited to join our ERN to ensure a proper representation of the neuromuscular patient community among the PAB.  In total, 38 patient representatives from 26 patient organisations and 13 countries are involved in the different EURO-NMD working groups. Patients are present in all the Boards and Committees of the Network.

Please have a look at their updated booklet from October 2023. You will (re)discover the Patient Advisory Board and the Patient Representatives.

November 2023

Thursday, November 30th - 16:00-17:00 CET
"Myopathology in Protein Aggregate Myopathies and vacuolar myopathies​" delivered by Dr. Montserrat Olivé Plana (Hospital Santa Creu i Sant Pau, Barcelona, Spain)

December 2023

Thursday, December 14th - 16:00-17:00 CET
"Motor Neuron Disorders: Juvenile ALS and atypical presentation forms​" delivered by Dr. Wladimir Bocca VR Pinto (Dept of Neuromuscular Diseases, Md PhD, Federal University of São Paulo (UNIFESP), Brazil​)

28. November 2023, 3 - 4 pm CET
Insights into growing up in families affected by Huntington’s disease Delivered by Siri Hagen Kjølaas (Oslo University Hospital HF, Center for rare diagnosis, Oslo, Norway)

13. December 2023, 3 - 4 pm CET
Diagnostic workup for genito-urinary dysfunctions in atypical parkinsonism Delivered by Pietro Guaraldi (Azienda USL di Bologna, IRCCS Institute of Neurological Sciences, Bologna, Italy)

Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C) are pleased to invite you to Neuromuscular Mystery Case Rounds.

This case-based rounds webinar is for Canadian clinicians, academics, and trainees with an interest in neuromuscular disease. NMD4C and MDC are providing organizational and technical support. This is a an independent clinical/academic webinar with no industry sponsorship or influence.

6. December 2023 - 5 - 6 pm ET

The ERICA & EJP RD Joint Conference will take place on November, 21st, 2023 in Amsterdam. The conference aims to bring together experts and stakeholders, such as the 24 ERNs, to explore the European and international rare disease ecosystems. It's a great opportunity to share ideas and increase knowledge. EURO-NMD will be present at the conference!

The international congress dedicated to neuromuscular science, MYOLOGY 2024, will take place in PARIS on April 22th-25th, 2024. This 8th edition is expected to gather about 1,000 delegates from all over the world. In the wake of our past successful congress Myology 2022 in Nice, we look forward to welcoming even more participants in the capital city of France.

A few weeks before the Olympic Games, we will have more than ever the opportunity to highlight how our knowledge arising from neuromuscular diseases can lead to innovations also benefitting the general public. We will also have a global overview of the latest advances in muscle science with a specific focus on disease-modifying therapies and medical breakthroughs.

At its conference in Bilbao, the European Economic and Social Committee (EESC) urged the European Union to launch a European action plan implement cooperation between national health systems. The main goal: to provide better diagnoses, treatment and care to patients with rare diseases. The conference on Rare diseases and European reference networks was organised under the auspices of the Spanish Presidency of the EU Council and in cooperation with the authorities of the Basque Country. It took place on 11 October 2023 in the Euskalduna Conference Centre in Bilbao, Spain.

Back-to-back to this conference, a side event on Amyotrophic Lateral Sclerosis (ALS) was organized by the European Economic and Social Committee in cooperation with the authorities of the Basque Country. The aim of the event was to raise awareness about ALS and ALS-patients and their families, review the progress made in research to provide better treatment and better care, and inform on actions developed at European level, such as the EU ALS Coalition.

Primary mitochondrial disorders (PMD) continue to be without any curative or evidence-based therapies, but in many cases, clinicians use one or more vitamins or cofactors to support the patient's mitochondrial function/metabolism and thereby help to alleviate the patient's health complaints.

In order to improve our understanding of which vitamins and cofactors clinicians use to support patients with PMD, the MetabERN’s Pyruvate metabolism mitochondrial oxidative phosphorylation disorders, Krebs cycle defects, disorders of thiamine transport and metabolism subnetwork [PM-MD (Mito)] has prepared a questionnaire.

The aims of this survey are:

1. to map the daily practice of vitamin and cofactor use among physicians treating children and adults affected by PMD
2. to use information from the survey to begin developping recommendations for the use of vitamins and cofactors to support patients affected by PMD 

The questionnaire is open to all PMD specialists from around the world until December 31, 2023. Answering takes 15-20 minutes. Please share this questionnaire with your colleagues in other centers/countries!

Thank you for your cooperation!