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Michela Onali won the EURORDIS 2023 Volunteer Award!
The entire EURO-NMD coordination team would like to congratulate her on this well-deserved award! Michela is a dedicated person for the cause of rare diseases. Indeed, she is an active member of the EURO-NMD Patient Advisory Board. She is also a member of the Muscle Diseases Group, the Research Board and the Educational Board within our network. Michela Onali advocates to facilitate dialogue, report on patients’ needs, guarantee effective and clear information, and to define research priorities while promoting the fundamental role of Natural History Studies and FAIR data in clinical trial design and therapy development.
Don't hesitate to read or re-read Michela's interview! 👇

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We would first like to thank all members for taking the time to participate in the ERN 5-year Evaluation. We know it wasn't easy, so we would like to express our gratitude for your continued efforts.

This will be the first time for our new members, but most of you are familiar with the Annual Data Collection for the continous monitoring. As you know, a reliable data collection from the ERN's, verifiable and auditable, is of utmost importance to the EU authorities, as key for future funding and sustainability of the ERN’s. The data collection is mandatory for all Full Members and Affiliated Partners.

The Euro-NMD data collection for the period January-December 2022 is now open, until Friday, March 31st, 2023

AFM-Telethon is pleased to announce the launch of its first international call for proposals for Translational Research Projects on « A single therapeutic product for several mitochondrial disorders ». The MitoNice Congress, organized in September 2022 by the AFM-Telethon along with the 7 th International Myology Congress, highlighted…

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The U.S. Food and Drug Administration (FDA) announced a new funding opportunity for the FDA Rare Neurodegenerative Disease Grant Program to support efficient natural history studies and/or biomarker studies that fill unmet needs for rare neurodegenerative diseases for children and adults.

Through the support of prospective natural history and/or biomarker…

The goal of the MuSkLE (Musculo-Skeletal system, Locomotion, Exercise) Summer School 2023 is to educate students on the development, regulation and function of the musculoskeletal system in different physiological and pathophysiological contexts. The influence of exercise and locomotor activities on this system will also be addressed. The training, combining seminars, tutorials and practical work, will be based on interdisciplinary experimental approaches (cellular, tissue, whole organ) conducted in animal models and in Human, in order to understand the mechanisms involved in the plasticity of the musculoskeletal system.

Key dates:

Deadline for submission (CV & motivation letter): March 15, 2023

Notification of selection:  March 31, 2023

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The 15^th Congress of the European Paediatric Neurology Society (EPNS) will take place on 20-24 June 2023 in the Congress Center Prague.

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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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…

Accredited Duchenne Centers provide comprehensive care according to the international care considerations and consensus guidelines. The program is initiated by the World Duchenne Organization.

More info below 👇

The FSHD Society’s highly rated masterclass on facioscapulohumeral muscular dystrophy (FSHD) is available on-demand for a limited time. Research on FSHD diagnostics, symptoms, and therapeutic interventions has advanced dramatically in just the past few years. This masterclass aims to help you shorten the diagnostic journey (currently averaging 9 years) and provide optimal care so that your patients with FSHD can live well, participate in clinical trials, and fully benefit from future treatments.