|
| |
Happy New Year 2025 from EURO-NMD!We hope 2025 brings happiness, health, and progress to everyone in our community. At EURO-NMD, we are excited to continue working together to improve care, support patients, and drive new advances in the field of neuromuscular diseases. Thank you to all the patients, families, healthcare professionals, researchers, and partners who make this work possible. Let’s make this year one of hope and positive change!
|
|
|
|
| |
This year, we have an exciting lineup of activities and initiatives for the neuromuscular community:
- More Webinars: We’ll be hosting even more online webinars where experts share updates in neuromuscular diseases. These sessions will offer valuable insights for patients, families, and professionals.
- 3 new patient journeys: We are developing three new patient journey guides to provide step-by-step information and support to patients and their families, helping them navigate their care with confidence.
- Enrollment in the Registry Hub: This year, we are focusing on expanding enrollment in our Registry Hub. By joining the hub, patients and professionals can contribute to research and improve understanding of neuromuscular diseases.
- Our 8th Annual Meeting in Essen: Join us at our upcoming Annual Meeting, where we’ll discuss key achievements, challenges, and the path forward for the neuromuscular community. It’s an opportunity to connect with others and share knowledge.
- Fantastic Summer Schools: Our Summer Schools program will return this year, offering hands-on training and learning opportunities for healthcare professionals, researchers, and advocates.
This is just the beginning! We have other exciting projects and surprises planned, so keep an eye on our updates.
|
|
|
|
| |
The EURO-NMD Coordination team is pleased to announce that the 8th EURO-NMD Annual meeting will take place on 5-6-7 March 2025 at the Essen University Hospital in Germany. This in-person event will focus on two key themes: Newborn Screening and Transition, addressing critical advancements in early detection and the seamless transition of care from pediatric to adult services.
The pre-registration for the meeting is now open to the public! Please note that registration is only valid after receiving confirmation email from us.
More details are available here. For any question, request or information regarding the Annual meeting, please send an email to annualmeeting@ern-euro-nmd.eu We are looking forward to seeing you in Essen!
Register here!
|
|
|
|
|
| |
The European Commission has established a system to assess the performance of European Reference Networks (ERNs) to ensure that they meet the goals set for improving care for rare diseases. This includes a set of 18 core performance indicators, designed to help evaluate both the network’s effectiveness and the contributions of individual HCPs.
The 2025 Monitoring Exercise is part of this ongoing process. It offers an opportunity for all HCPs to report on key metrics that showcase their contributions and progress in the previous year. By engaging in this exercise, HCPs help ensure that ERNs maintain the high standards expected by the European Commission and continue to work towards advancing care and research in rare diseases.
|
|
|
|
|
|
|
| |
The ERN EURO-NMD Working Group on Peripheral Nerve Diseases is pleased to present a Webinar series dedicated to Dysimmune and inflammatory neuropathies. This seven-episode series brings together clinicians, researchers, and patients to discuss a range of neuropathies and address key topics, including (but not limited to) challenges in diagnosis, advances in treatment, guidelines, emerging biomarkers, electrodiagnostic patterns, and the role of imaging in clinical practice.
Next episode:
Episode 2: Thursday, 30 January 2025
Time: 16:00 - 17:00
Topic: Update on Guillain-Barré Syndrome Guidelines
Speaker: Pieter van Doorn (Erasmus MC University Medical Centre Rotterdam)
Click here to register!
|
|
|
|
|
|
| |
If you missed a webinar, don't panic! All our webinars are recorded and made available on our website. |
|
|
|
| |
12 February 2025
17:00 CET
Theme: "Approach of an acute motor disorders"
Clinical neurology depends heavily on careful attention to history-taking, particularly temporal factors such as slow/gradual or rapid onset; episodic/repetitive motor features; accompanying sensory features such as numbness or paraesthesia or altered special senses affecting hearing (noises/deafness) visual phenomena: loss of vision/abnormal visual phenomena; presence or absence of pain; impact on eating and drinking, abnormal weight loss and weight-gain and abnormal bodily functions. The history guides the clinician towards a set of most likely pathologies further confirmed by the clinical examination/localisation. Together, history and examination determine which investigations to order: imaging, neurophysiology, clinical chemistry and haematology.
Speaker: Jean Pierre Lin
Chair: Kathleen Gorman
|
|
|
|
|
|
| |
EURO-NMD Supports Rare Disease Day 2025 – February 28 EURO-NMD proudly supports Rare Disease Day 2025, a global initiative dedicated to raising awareness and advocating for equitable access to diagnosis, treatment, and care for those living with rare conditions. Since 2008, Rare Disease Day has united patients, caregivers, researchers, and healthcare providers to drive innovation and inclusivity, improving the lives of individuals with rare diseases worldwide. Coordinated by EURORDIS and over 65 national patient organizations, this annual event inspires advocacy on local, national, and global levels. 📅 Date: February 28, 2025
📍 Location: Worldwide Join us in supporting this vital cause!
|
|
|
|
| |
Join the LGMD Masterclass in Montreal – April 24–25, 2025 Healthcare professionals in North America are invited to the Limb-Girdle Muscular Dystrophy (LGMD) Masterclass at The Courtyard Hotel, Montreal. This free, in-person event offers two days of expert-led lectures, interactive workshops, and networking opportunities. Chaired by Dr. Nicholas Johnson (USA) and Dr. Jodi Warman Chardon (Canada), the masterclass will provide valuable insights into LGMD diagnosis and management. Spaces are limited—register early!
|
|
|
|
| |
PNS Annual Meeting: The global hub for Peripheral Nerve Research
The Peripheral Nerve Society (PNS) unites scientists, physicians, and healthcare providers worldwide to improve understanding and treatment of peripheral nerve diseases.
The PNS Annual Meeting is the largest event dedicated to peripheral nerve research, offering opportunities to learn about the latest developments and connect with experts. Thanks to sponsor support, the program includes focused sessions led by groups like the CMTR, INC, IDNC, NPC, and TTNC, highlighting important progress in the field.
🗓️ 17 – 20 May 2025
📍 Edinburgh
|
|
|
|
| |
Join leading neurologists, researchers, and healthcare professionals in Helsinki, Finland, for the 11th Congress of the European Academy of Neurology (EAN). This premier event will feature pioneering research, plenary lectures, and interactive workshops, covering a wide range of topics, including neurodegenerative diseases, stroke, epilepsy, and multiple sclerosis. Helsinki’s vibrant culture and stunning surroundings provide the perfect backdrop for networking and knowledge exchange. Don’t miss this essential event for advancing neurology and improving patient care. 📅 Dates: June 21–24, 2025
📍 Location: Helsinki, Finland Stay tuned for registration details on the official EAN Congress website!
|
|
|
|
| |
The conference held in Budapest on November 29, 2024, focused on the European Economic and Social Committee’s (EESC) exploratory opinion titled "Leaving No One Behind: European Commitment to Tackling Rare Diseases."
This opinion was developed at the request of the Hungarian Presidency of the Council of the EU and calls for the European Commission to release a Communication outlining a European action plan for rare diseases for the 2025-2029 period. The goal is to ensure that patients with rare diseases receive a diagnosis within one year of the onset of symptoms. |
|
|
|
| |
EURORDIS Black Pearl Awards: Celebrating rare disease champions! The EURORDIS Black Pearl Awards, held every February to mark Rare Disease Day, honor the achievements of individuals and organizations making a difference for those with rare diseases. Since 2012, EURORDIS has recognized the dedication of patient advocates, scientists, policymakers, and more. The 14th edition will take place on Monday, 24 February 2025, in Brussels and online. The hybrid event includes a cocktail reception, awards ceremony, live performances, and networking opportunities. Event details: - In-person: 18:30 – 23:00 at the Cardo Hotel, Brussels
- Online: 19:30 – 22:00 (live-streamed ceremony)
|
|
|
|
