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EAMDA Scientific Conference 2025, held online on 27–28 November 2025, brings together key stakeholders in the neuromuscular field, including clinicians, researchers, healthcare providers, patient organizations, individuals with lived experience, and representatives from the pharmaceutical sector, to discuss the latest advancements in the neuromuscular field. Over two days, the online conference will explore therapeutic developments, innovations in newborn screening, multidisciplinary care models, rehabilitation approaches, and collaborative initiatives driving change across Europe. *This online event will be recorded. Your participation constitutes consent to the use of your image and voice for the purposes of documenting and reporting on the conference. If you…

EAMDA extends its appreciation to Roche, Biogen and Alexion Pharmaceuticals, Inc. for their continuous commitment and generous support in organizing “Advancing Together: Shaping a Brighter Future for NMD Patients” Workshop in Ljubljana. With their partnership, we successfully brought together patients, patient representatives, experts, and other interested stakeholders to present and discuss on diagnostics, patient care, research, and patient empowerment in the NMD community. Thank you for your commitment to help us make a lasting impact!

On 25–26 October 2024, EAMDA hosted the “Advancing Together: Shaping a Brighter Future for NMD Patients” Workshop in Ljubljana, Slovenia—a capacity-building event, dedicated to our member organizations. We brought together patients, patient representatives, pharma partners, and other interested stakeholders for two days of insightful presentations and discussions covering essential topics, including diagnostic and newborn screening, care of NMD patients, research and clinical trials. Participants also had a unique opportunity to deepen their understanding of Euro-NMD ERN and the extensive range of activities it offers. There is still a significant need for increased involvement from patient representatives, especially from Eastern Europe,…

Join us for EAMDA’s 2023 International Neuromuscular Conference, held in person! This year’s conference will take place on September 30th & October 1st, in Bucharest, Romania. Discover the latest breakthroughs in neuromuscular disease research & treatments on the medical day and have the opportunity to improve your network and build stronger patient communities on the social day. Find more details, agenda and registration link here: https://eamda-ic2023.eu

EAMDA's SMA Webinar Dear Friends, Partners and Member Organizations, We are pleased to invite you to the upcoming SMA Webinar hosted by EAMDA on Wednesday, August 30th, starting with 18:00 CET. During this webinar, esteemed experts will delve into important topics shaping the landscape of Spinal Muscular Atrophy research and treatment. Agenda Clinical Trials in SMA: Exploring Progress and Prospects Advancements in SMA Treatments: A Comprehensive Overview Newborn Screening for SMA: Impact and Implementation Registration To register for this event, please visit the following registration link: Register We look forward to your participation and insightful contributions! Feel free to share this invitation with…

It is our distinct pleasure to extend an exclusive invitation to your esteemed organizations to take part in the forthcoming EAMDA International NMD Conference 2023! Date: September 30th - October 1stLocation: Ramada Plaza by Wyndham Bucharest Hotel, Bucharest, Romania This conference represents a pivotal moment in advancing our shared mission of enhancing knowledge, collaboration, and progress within the NMD community. It is a platform where patients, patient representatives, medical professionals, researchers,  industry experts and key stakeholders will converge to explore the latest breakthroughs, pioneering treatments, and innovative strategies that will shape the future of neuromuscular diseases care. Why Attend? Gain Insights: Immerse…

US Food and Drug Administration (FDA) has approved delandistrogene moxeparvovecrokl (also known as SRP 9001) for the treatment of ambulatory children (those who are able to walk unassisted) aged 4 through 5 years with Duchenne muscular dystrophy (DMD) and a confirmed mutation in the DMD gene (23 June 2023). See more details in the document below. Roche Community Letter - SRP-9001 FDA ApprovalDownload  

Unique way to learn, exchange knowledge and be informed about Neuromuscular Disorders (NMD) One of the most important activities EAMDA is conducting each year is The International Conference on NMD, dedicated to medical professionals, patients, caregivers, connected stakeholders, as well as general public. This is a unique opportunity to learn, exchange knowledge and expertise, be informed about Neuromuscular disorders (NMD) and have access to latest updates in the field! The International Conference on NMD 2022 is a two-days educational event, divided into two parts:  International conference on NMD – lasting two days – open to the public;  Satellite medical symposium – open…