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Our website is undergoing renovation!🛠️
We would like to apologise for any inconvenience caused.
Please do not hesitate to send us your suggestions for improvement:
👉 support@ern-euro-nmd.eu
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On April 27, Dr. Nicole Voet from Radboud University Medical Center in the Netherlands delivered "Fatigue in Neuromuscular Disorders".
The webinar was a great success with approximately 80 participants including several Patient Representatives from EURO-NMD. We have had excellent feedback from this webinar.
As a follow-up to this webinar, we would like to gather patient input with a short survey 👉 https://forms.office.com/e/c38QWrnE6
Thank you for your help.
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Rationale for this research study: BAG3 is a muscle cytoprotective protein and mutations in the BAG3 gene cause a series of heterogeneous neuromuscular and/or cardiac disorders, with either a childhood or adult onset. While some mutations seem to be associated with an early-onset and severe myopathy with cardiac involvement, others are associated with and adult-onset CMT2-type disease. However, there are currently no large series of patients allowing for an exhaustive characterization of the frequency of each of the clinical presentations, the age of onset of symptoms, the severity and progression of the disease as well as the different associated genotypes. In addition, various therapeutic interventions, such as Metformin, are currently being studied in preclinical models. Therefore, we think that it is essential to collect data from patients suffering from...
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The course “Development of Clinical Practice Guidelines” is already available in the EU Academy of the European Commission, accessible to those who have a EU login (https://webgate.ec.europa.eu/).This training has been developed within the framework of the ERN Guideline Programme and it pursues improving the capability of ERNs healthcare professionals, CPGs developers and expert panel…
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July 2023
Thursday, July 6th - 16:00-17:00 CEST
"Cardiac Involvement in Neuromuscular Diseases" Delivered by Prof. Karim Wahbi, PhD, MD (APHP Hospital Cochin, Paris, France)
Karim Wahbi is a University Professor and Hospital Practitioner at the University of Paris. He coordinates the Cochin Hospital site of the Reference Center for Neuromuscular Diseases North/East/Ile de France, dedicated to the management of cardiomyopathies associated with neuromuscular and metabolic diseases, particularly mitochondrial diseases. Karim is a founding member of the Paris Myocardial Institute (IMyP).
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September 2023
Thursday, September 14th - 16:00-17:00 CEST
"Mitochondrial myopathies" Delivered by Prof. Dr. Anders Oldfors (University of Gothenburg and Sahlgrenska University Hospital, Sweden)
Anders Oldfors studied medicine in Gothenburg, Sweden between 1969 and 1975. After his PhD thesis in 1980 he did a post doc with Michel Fardeau in Paris, 1981. During specialization in surgical pathology 1982-1985 he initiated diagnostic service and research in muscle pathology in Gothenburg. The research was initially focussed on mitochondrial diseases in an interdisciplinary network of pioneers in the mitochondrial disease field. His interest in pathology of mitochondrial diseases has continued over the years and he has published more than 90 scientific articles in this field.
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If you missed a webinar, don't panic! We record all our webinars and they are available on our website. |
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Tuesday 23 May 2023, 3-4pm CET
Frontotemporal dementia vs. primary psychiatric disorders by Tim van Langenhove (University Hospital Ghent, Belgium)
Tuesday 13 June 2023, 3-4pm CET
Dissecting Fahr's disease by Amit Batla and Francesca Magrinelli (Institute of Neurology, University College London, UK)
Tuesday 20 June 2023, 3-4pm CET
Haematopoietic Stem Cell Transplantion in Leukodystrophies by Jörn-Sven Kühl (University Hospital Leipzig, Germany)
Tuesday 27 June 2023, 3-4pm CET
Huntington disease: new insights into molecular pathogenesis and therapeutic opportunities by Sarah Tabrizi (UCL Queen Square Institute of Neurology, London, UK)
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"Infantile epileptic spasms syndrome early diagnosis and management" by Prof. Finbar O’CallaghanThe EPNS is delighted to offer FREE 1 hour to 1.5 hour long webinars on topics of key interest to Child Neurologists on the 2nd Wednesday of each month at 17:00h CET. Each webinar is broadcast live on Zoom and available for FREE to anyone who would like to register. Don’t worry if you are not available for the live broadcast however because fully paid up EPNS members will be able to access a recording of the full session via the EPNS website after the event.
📆 14 June 2023
⌚️17:00 CET
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The 25th Summer School of Myology will take place at the Institute of Myology in Paris from June 12 to 16, 2023 in two ways: face-to-face, for 40 to 50 people, and online, on the same dates, for remote participants. The full face-to-face course will include five full days of instruction combining lectures and practical workshops. Internet users will benefit from three interactive sessions of 4 hours each on Monday afternoon, Wednesday afternoon, and Friday afternoon. One month before the start of the School and until September 15, 2023, all registrants (face-to-face or distance learning) will have online access to some sixty pre-registered courses. All registrations will be done on the AcadeMYO platform after validation of the requests by the Scientific Committee of the Summer School.
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Do you want to improve your knowledge on current and future modalities of rehabilitation in rare and complex peripheral neuropathies ?
Join us at the Summer School on Neuropathies Rehabilitation in September 2023 in Rome.
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The Baltic School of Neuro-Myology Satellite Meeting 2023 “Update in Neuromuscular disorders” -CONGENITAL MYOPATHIES AND MUSCULAR DYSTROPHIES- that will take place in Riga, Latvia, June 14th-15th 2023. The main theme of this years event is “Congenital myopathies and muscular dystrophies”. On the first day the official language of the event will be Latvian, but on the second day – English. This meeting is endorsed by the ERN EURO-NMD. Registration for the event is open here.
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The 15th Congress of the European Paediatric Neurology Society (EPNS) will take place on 20-24 June 2023 in the Congress Center Prague.
ERN EURO-NMD will have a booth at EPNS. Stay tuned, we will give you more details soon, come and meet us!
The main highlight of the congress is “From genome and connectome to cure”. They invite us to see how the latest trends in understanding pathophysiology of neurological diseases are being implemented in clinical practice. Their field has traditionally focused on precise diagnostics; however, curative treatments were unavailable for a long time. Today, this trend is changing rapidly and novel therapeutic options in our field have brought hope to many families of children even with the most severe neurological conditions.
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For the 9th annual congress of the European Academy of Neurology we will be travelling to the grand and beautiful city of Budapest on 1-4 July, 2023. Numerous notable researchers have called Budapest home while contributing to the development of neurology and neurosciences. Names such as Ernő Jendrassik, József Mátyás Baló, Károly Schaffer, and…
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The 56th annual European Human Genetics Conference 2023 that will take place in Glasgow, Scotland, UK, from June 10 to 13th. The annual ESHG conference is the major scientific and professional event in human genetics which brings together European and international geneticists. Our field is developing extremely fast with important implications for basic science,…
We will have a booth at the ESHG conference. Stay tuned, we will give you more details soon, come and meet us!
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Staying up-to-date on the latest developments in Duchenne muscular dystrophy (DMD) care is crucial for providing the best possible care for people living with this condition. For this reason, we are pleased to invite you to register for the upcoming Duchenne Care Conference 2023. Date: June 7 and 8, 2023 Time: 15:00 – 18:00 Central…
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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…
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The new session of the MOOC "From Lab to Clinic: Translational Research for Rare Diseases" has been launched. Learn the fascinating journey of translating research into treatments for Rare Diseases.
With expert guidance, explore drug discovery, clinical trials, regulatory approval, and challenges in this unique field. Gain insights from patients and experts, understand trial planning, design, and data sharing. By the end, you'll have a comprehensive understanding of how evidence is built for safe and effective treatments.
Join now and make a difference in Rare Disease research! 
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The World Duchenne Awareness Day 2023 theme is ‘Duchenne: Breaking Barriers’. World Duchenne Awareness Day (WDAD) is an annual event held on September 7th. With this, WDAD supports creating a society that provides equal opportunities for all. This year they organize the 10th edition. People living with Duchenne and Becker muscular dystrophy (DMD/BMD) face physical, healthcare and social barriers. This severely limits their ability to participate fully in community life and activities. On September 7th, we call on you to take on responsibility and help break down barriers for people living with DMD/BMD. On this day, we will launch a WDAD Documentary showing the lives of people living with DMD/BMD across the globe and how they are each breaking barriers in their personal lives.
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Exchange of knowledge on diagnosis and treatment of rare diseases can improve the quality of life of patients The 2023 Horizon EU health call dedicated to the European Partnership on rarediseases is still open! Horizon Europe is the EU’s key funding programme for research and innovation with a budget of €95.5 billion.
It tackles climate change, helps to achieve the UN’s Sustainable Development Goals and boosts the EU’s competitiveness and growth. The programme facilitates collaboration and strengthens the impact of research and innovation in developing, supporting and implementing EU policies while tackling global challenges. It supports creating and better dispersing of excellent knowledge and technologies. It creates jobs, fully engages the EU’s talent pool, boosts economic growth, promotes industrial competitiveness and optimises investment impact within a strengthened European Research Area. Legal entities from the EU and associated countries can participate. Apply by September 19th!
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