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We are delighted to announce the opening of a new Cross-cutting Specialist Group: Multidisciplinary Treatment & Care.
This new group has been created on the initiative of our Norwegian members. The group will be open to all professions involved in the management and care of neuromuscular diseases, and will cover the following areas :
- Rehabilitation
- Physical and occupational therapy
- Speech therapy and oral care
- Dietetics
- Nursing care
- Psychosocial aspects
- Social work
- Assessment and management of cognitive functions
The chair of this group is Marianne Nordstrøm, together with co-chairs: Hanne Ludt Fossmo, Andreas D. Rosenberger, Kristin Ørstavik.
In addition to the chair and co-chairs, the Specialty Group will appoint a core group of 6-7 people from different European countries.
To ensure the progress and activity of the specialty group, annual meetings will be organized for the chair, co-chairs and members of the specialty group.
They organized their first workshop last May in Oslo, to take a first overview of the current state of play. It was a great success!
(See photo below)
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The European Society of Human Genetics Conference took place in Glasgow from June 10th to 13th, 2023. We decided to set up a joint ERN booth with ERN-EYE, ERN-ITHACA and ERN-GENTURIS. Our project managers, Carla D'Angelo and Houda Ali, were on hand to highlight rare neuromuscular diseases. The conference was a success, both in terms of attendance and the outstanding presentations.
We look forward to the next edition!
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We also had the pleasure of meeting Zsófia Flóra Nagy, one of the EURO-NMD 2022 bursary winners, who was presenting her poster on genetic screening of Hungarian patients with focal dystonia at the #ESHG2023.
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The conference aims at promoting exchanges between radiologists, neurologists, biologists, physicists, engineers, and other scientists involved in neuromuscular imaging, particularly but not exclusively focusing on MR imaging and spectroscopy. The main topics selected for the 2023 edition are: emerging imaging approaches, other imaging modalities, dynamic imaging, and clinical research. Beside keynote and invited lectures by renowned experts, ample time will be reserved for poster discussion and selected orals from submitted abstracts. In addition, a whole afternoon of educational sessions will be offered, focusing on basic MRI methodology and basic muscle biology and pathology, including Q&A’s. Finally, a debate with experts in the field will be organized on the evolving role of imaging in the field.
📆 5-7 November 2023
📍 Langenbeck-Virchow-Haus, Berlin, Germany
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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 20 June 2023, 3-4pm CET
Haematopoietic Stem Cell Transplantation 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)
Tuesday 12 September 2023, 3-4pm CET
Friedreich Ataxia by Kathrin Reetz (RWTH-University Hospital Aachen, Germany)
Tuesday 26 September 2023, 3-4pm CET
Neuropsychological assessment in primary progressive aphasia – recommendations and pitfalls in clinical practice by Lize Jiskoot (Erasmus Medical Center Rotterdam, Netherlands)
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"Rett Syndrome and related disorders" by Nadia Bahi-BuissonThe objectives of this course is to recognize and diagnose disorders associated with variations of MECP2, list and diagnose the most common comorbidities associated with Rett syndrome and utilize the Rett syndrome Care Guidelines
📆 28 June 2023
⌚️17:00 CET
Chair : Dana Craiu
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The Neuropathies Rehabilitation Summer School, held under the auspices of ERN EURO-NMD, is a specialized event designed for physiotherapists, occupational therapists, clinicians with an interest in neuromuscular diseases, clinicians specializing in rehabilitation medicine, and patient advocacy groups. The primary objective of this summer school is to disseminate knowledge about current and future modalities of rehabilitation in rare and complex neuropathies. The Neuropathies Rehabilitation Summer School will take place from September 18-21, 2023 in Hotel Excel Roma Montemario, Rome, Italy.
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The ERICA 3rd General Assembly takes place 6-7 July in Madrid as a face-to-face meeting. Hosted by Servicio Madrileno de Salud- Hospital Universitario La Paz (SERMAS-HULP). Coordination office of ERN-TransplantChild. The aim of the General Assembly (GA) is to inform all the beneficiaries about the progress of the planned and completed ERICA project activities in more detail and to raise more awareness about the Rare Disease Research perspectives and cooperation within the ERN’s and other relevant partners.
Our project manager Houda Ali will be present and representing EURO-NMD.
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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.
EURO-NMD will have a booth at EPNS, come and visit us at booth F08!
Our Coordinator Teresinha Evangelista will participate in a session on Thursday, 22 June 2023 : "Rare Neurological Disorders in Children and the Role of the European Reference Networks". This is a session dedicated to ERNs, with the presence of the coordinators of ERN-EPICARE, ERN-RND, MetabERN and ERN ITHACA.
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 World Muscle Society (WMS) is delighted to invite you to attend the 28th International Annual Congress of the World Muscle Society that will take place 3rd – 7th October 2023, in Charleston, South Carolina, United States.
The 5-day meeting will be an opportunity to catch up on the latest developments in neuromuscular diseases from around the world. The main thematic topics of this congress focused on translational medicine are: Topic 1: Understanding phenotypic and genetic diversity in neuromuscular disorders
Topic 2: Pathobiology of neuromuscular repeat expansion diseases
Topic 3: The effect of lifestyle, exercise and nutrition on neuromuscular pathology and outcomes
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After a postponement due to pandemic-related reasons, the 13th International Congress of Paediatric EMG, which will be held in La Baule, France, on Nov 13-15, 2023, 3 years after the last one in Cambridge. They are drawing an exciting program including topics in all areas of paediatric EMG, of interest to all pediatricians, neurologists, physical therapists, etc... involved in the field. With the organizing committee, They hope to provide a rich forum for clinical exchanges, educational opportunities and social and professional networking. Slots will be reserved for oral communications after submission. In between, do not hesitate to spread the information.
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The John Walton Muscular Dystrophy Research Centre of Newcastle University (UK) for a Research Assistant/Associate Job and also Clinical Research Associate. It is a great opportunity to join a world-class centre for Neuromuscular Diseases' Research and Care! For more information, click on the links below: - Research Assistant/Associate
- Clinical Research Associate - also on Twitter and Facebook and LinkedIn
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An N-of-1 trial is defined as a prospective, multiple crossover trial in a single patient. If randomization of the treatment sequence and replication across patients is included in the trial design, then it results in “replicated N-of-1 RCTs”. These replicated N-of-1 RCTs have been recommended to test evidence-based treatments for patients with rare diseases, but several design and statistical issues have to be taken into account when such a research strategy is chosen. In the webinar,... |
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