We recently launched a redesigned website to better serve the neuromuscular disease community. The new features include a user-friendly platform for accessing resources, support, and updates for patients & healthcare professionals.

- Discover the Patient Area: We’ve also enhanced our resources for patients, providing an easy-to-navigate area with valuable information and support.

- Create your Private Space: As a member, you can now set up your very own private space on our website. This exclusive feature allows you to manage your profile, connect with the community, and access member-only content customized to your needs.

- Find out the News & Events Area: Stay up-to-date with the latest news and events, now more accessible than ever, with improved navigation and timely updates.

👉 Visit the new website and explore the new features today!

We are excited to announce the upcoming 8th Annual Meeting of the European Reference Network for Rare Neuromuscular Diseases (ERN EURO-NMD)! This year’s event will be centered around two overarching themes that are crucial to the ongoing advancement of patient care: Newborn Screening and Transition.

Why these themes?

• Newborn Screening: Early detection of rare neuromuscular diseases is a game-changer. We’ll explore advancements in screening practices and discuss how early intervention can significantly impact outcomes for patients and families.
• Transition: Addressing the challenges of transitioning young patients from pediatric to adult healthcare services is a critical focus. Our sessions will highlight into best practices for facilitating effective transitions while maintaining high standards of care and support.
  

Get ready for the EURO-NMD Neuromuscular Neuropathology Webinar Series—an exciting nine-episode journey through the world of muscle biopsies, led by Professor Edoardo Malfatti!

Starting in early November, this series will immerse you in the art and science of muscle biopsies, with each session filled with insights, practical techniques, and pioneering advancements in neuromuscular pathology. This rare opportunity offers a chance to learn from top experts, analyze real-world cases, and refine your diagnostic skills.

Don’t miss this unique series and the opportunity to connect with a passionate community of neuromuscular specialists!

Programme:

Replay of Episode 1: “Basic techniques for muscle biopsies” delivered by Prof. Tiziana Mongini (Department of Neuroscience of the University of Turin, Italy)
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Thursday 14 November 2024 16:00 CET

Episode 2: “Electron microscopy for myopathies“ delivered by Prof. Giovanna Cenacchi (Head of the Subcellular Pathology and Diagnostics Laboratory, S. Orsola-Malpighi Hospital-University University of Bologna)

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Thursday 21 November 2024 16:00 CET

Episode 3: “Muscle pathology of storage diseases with focus on plyglucosan and lipid storage myopathies” delivered by Prof. Anders Oldfors (University of Gothenburg, Sweden)

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Thursday 28 November 2024 16:00 CET

Episode 4: “Myopathology for muscular dystrophies“ delivered by Prof. Edoardo Malfatti (Paris-Est AP-HP, France)

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Thursday 05 December 2024 16:00 CET

Episode 5: “The role of muscle biopsy in inflammatory myopathies” delivered by Prof. Werner Stenzel (Charité – Universitätsmedizin, Berlin, Germany​)

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Thursday 12 December 2024 16:00 CET

Episode 6: “The role of biopsy in Congenital Myopathies” delivered by Prof. Dr. Norma Romero (Institute of Myology, Paris, France​)

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Thursday 19 December 2024 16:00 CET

Episode 7: “Novel approaches and future developments in Neuromuscular Pathology” delivered by Prof. Edoardo Malfatti (Paris-Est AP-HP, France)

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Thursday 09 January 2025 16:00 CET

Episode 8: “The role of biopsy in Autophagic Myopathies” delivered by Dr. Teresinha Evangelista (Institute of Myology & Pitié Salpêtrière Hospital – AP-HP, Paris, France)
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Thursday 16 January 2025 16:00 CET

Episode 9: “The role of biopsy in acquired myopathies, other than inflammatory myopathies” delivered by Dr. Sarah Leonard-Louis (Pitié Salpêtrière Hospital – AP-HP, Paris, France)

Join us for this unique opportunity to perfect your skills in myology, an increasingly exciting discipline dedicated to neuromuscular science!
All professionals manifesting some interest in the field are encouraged to apply.

Be prompt in doing so as the maximal gauge has been set to 100 participants this year.

Registration fees will  include :

• Full access to the streaming platform 2 weeks before the course and 4 weeks after the course (late November 2024 to early January 2025)
• 40 + pre-recorded lectures of 30 minutes each
• 3 live online sessions of 4h duration each including 90 min interactive workshops, evaluations, quizzes …
• Deadline : 20th November 2024

The ERICA 4^th General Assembly & ERN Research Conference will take place from December 11^th to December 13^th, 2024 in Udine, Italy.

Hosted by MetabERN.

The aim of the ERICA consortium, in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity. ERICA Conference serves as a great opportunity to ‘meet and greet’ the active ERN research community, to present the research projects involving ERNs and to discuss the future of the ERN related Research.

We call all the stakeholders to think What is ERN research or what should be typical ERN research? We aim to define a corporate identity of ERN Research and to set the standards for the future RD Programs and the Clinical Research Network. With special attention to new ‘raising stars’ in ERN Research, who we encourage to reply to the Call and submit their Abstracts. Best ones will get the opportunity to present their posters during the conference, with the possibility to write a paper that will be published in an extra Supplemental issue of Current and Future of ERN Research in Orphanet Journal of Rare Diseases.

The 16th European Paediatric Neurology Society (EPNS) Congress will take place from July 8–12, 2025, in Munich, Germany, at the International Congress Center (ICM). This major event will bring together experts in paediatric neurology from around the world to discuss the latest advancements in the field.

The program will feature various sessions, including plenary talks on topics such as acute brain attack, movement disorders, and neuroimmunology. There will also be parallel sessions and early morning teaching sessions on areas like ketogenic dietary therapies, epilepsy, and ethics in paediatric neurology.

Learn more about the stimulating programme and SUBMIT your ABSTRACT (closes 15 January 2025): https://epns-congress.com/

Duchenne Patient Academy is organized by the Duchenne Data Foundation in collaboration with the World Duchenne Organization. Upon the launch of the first edition in 2018, DPA has trained over 500 patient advocates from 55 countries. Over the course of multiple days, patient representatives receive training on how to successfully advocate for people living with dystrophinopathies.

This year we are inviting the new generation of patient advocates who are looking to sharpen their advocacy skills and engage in critical discussions on DMD/BMD. We invite members and aspiring members of the World Duchenne Organization to send in an application.

The Duchenne Patient Academy is a unique opportunity for motivated patient advocates to receive intensive training on key aspects and skills needed to make a meaningful impact in the field. We encourage new advocates interested in understanding research, advocating for access, and improving standards of care for people living with DMD/BMD to apply.

• Friday, December 6: 16:00 – 19:00 CET
• Saturday, December 7: 14:00 – 20:00 CET