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This update of the guideline on the management of amyotrophic lateral sclerosis (ALS) is a significant collaborative effort involving several prominent organizations in the field of neurology and neuromuscular diseases. It's great to see such cooperation in updating guidelines for the management of amyotrophic lateral sclerosis (ALS), a condition that requires multidisciplinary approaches for optimal care.
The involvement of organizations like the European Academy of Neurology (EAN), the European Network for the Cure ALS (ENCALS), and the European Organization for Professionals and Patients with ALS (EUpALS) signifies a comprehensive and inclusive approach to addressing the complexities of ALS management.
This collaboration ensures that the latest research findings, clinical insights, and patient perspectives are considered in updating the guidelines, ultimately improving outcomes for individuals affected by ALS.
This fall we're hosting a series of webinars on ALS.
Find out more here!
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The EURO-NMD Registry paper has just been published on the Orphanet Journal of Rare Diseases. As it is open access you can read it here: click to open in another tab
We leave below a Q&A teaser about what is discussed inside the paper. Why EURO-NMD Registry Hub? - The EURO-NMD registry is connected to what is called ‘EURO-NMD Registry Hub’ through an interoperability layer
- The Hub provides an entry point to other neuromuscular registries that follow the FAIR data stewardship principles and enable GDPR-compliant information exchange
- Four national or disease-specific patient registries are interoperable with the EURO-NMD Registry, allowing for federated analysis across these different resources.
- Collectively, the Registry Hub brings together data that are currently siloed and fragmented to improve healthcare and advance research for neuromuscular diseases.
Click here to read the paper
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The 6th Neuromuscular Translational School organized by EURO-NMD and TREAT-NMD focuses on therapy development from bench to bedside with a focus on neuromuscular disorders.
The Translational Summer School contains lectures about the current state of the art of the management of acquired and genetic neuromuscular diseases, the different steps of drug development and the tools needed for this (outcome measures, biomarkers etc). It also stresses how patients should play a role in each of these steps and teaches how to communicate research to patients and the general public during interactive workshop sessions.
Pre-registrations are now open:
📌Click here to complete the pre-registration form!
If your application is accepted, you will be contacted by email to complete your registration. Be careful to keep an eye on your spam folder! Kindly be informed that your registration will only be confirmed upon receipt of an email notification from the Organizing Team, confirming acceptance of your registration and upon completion of the registration fee payment process.
📆 9 - 12 July 2024
📍 Leiden, the Netherlands
Click here to see the preliminary Programme!
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This survey will allow us to better identify the patient's symptom burden. This survey is only for adult patients (18 years and older) and must be completed by the patient only or the caregiver. Please note that the survey is anonymous, no sensitive data will be collected. We appreciate your collaboration in ensuring that as many patients as possible have the opportunity to participate. If you have any questions or require further information, please do not hesitate to reach out Prof. Michelangelo Mancuso (michelangelo.mancuso@unipi.it) and Manuela Lavorato (the project coordinator, manuelalavorato@gmail.com). Please share the survey link below. The survey must be completed no later than April 10th, 2024 (It will be available for 3 months starting from January 10th).
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Neuropathies is bringing together professionals from various specialties to shed light on the complexities of neuropathic disorders. It's a vibrant platform where neurologists, geneticists, pathologists, and other experts gather to illuminate the latest research findings and clinical implications. Through lively discussions and collaborative exchanges, attendees ignite new ideas and approaches to enhance patient care.
This gathering isn't just informative; it's a ray of hope for individuals affected by neuropathies, promising brighter prospects through shared knowledge and teamwork. This year, Tallinn, the enchanting capital of Estonia, with its rich history and vibrant culture, provides the perfect backdrop for the gathering, that is aimed to rotate between Baltic countries every year in August.
📆 23 - 24 August 2024
📍 Leiden, the Netherlands
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The XXIV National Congress of the Italian Association of Myology is set to be an important event focusing on the theme of "Neuromuscular Diagnosis: A Multidisciplinary Approach from Histopathology to Molecular Genetics, with a Focus on Inflammatory and Toxic Myopathies." This theme highlights the comprehensive nature of diagnosing neuromuscular disorders, emphasizing the importance of integrating various diagnostic techniques and approaches to provide accurate assessments and effective management strategies. The congress will likely feature sessions and discussions exploring the role of histopathology, molecular genetics, and other diagnostic modalities in the evaluation of neuromuscular diseases. Attendees can expect presentations on the latest advancements in diagnostic methodologies, including the use of imaging techniques, biomarkers, and genetic testing, to better understand the underlying mechanisms of inflammatory and toxic myopathies.
📆 5 June 2024
📍 Rome, Italy
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We’re happy to announce our upcoming webinar series on Gene Therapy co-organized by EURO-NMD, ERN-RND, for rare neurological diseases, ERN EpiCARE, for rare and complex epilepsies and European Academy of Neurology (EAN), where we’ll delve into the latest advancements and breakthroughs in this interesting field. Join us as we will explore: - Cutting-edge research in gene therapy: Discover the latest developments and innovations driving gene therapy forward.
- Clinical applications and successes: Learn about successful gene therapy treatments and their impact on patients’ lives.
- Ethical considerations and future prospects: Delve into the ethical implications of gene therapy and explore future directions for research and application.
- Expert discussions and Q&A sessions: Engage with leading experts in the field, participate in insightful discussions, and get your questions answered.
Tuesday 2 April 2024, 17:00 – 18:00 CET Episode 1: “General overview of gene therapy developments for clinicians” 20′ presentation by Dr. Francina Munell Casadesus (Hospital Universitari Vall D’Hebron, Barcelona, Spain)
“Gene therapy in clinical practice- when and how” 20′ presentation by Prof. Laurent Servais (University of Oxford, United Kingdom)
Click here to register!
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You can also register for episode 2 & 3 now:
Wednesday 10 April 2024, 16:00 – 17:00 CET Episode 2: “Basic technologies and challenges in translation” by Prof. Dr. Hildegard Büning (Hannover Medical School, Germany) Click here to register!
Thursday 18 April 2024, 16:00 – 17:00 CET Episode 3: “Lessons learned across different disorders and challenges in the development of gene therapies” 20′ presentation by Dr. Kathrin Meyer (Nationwide Children’s Hospital, Columbus, Ohio USA) “The regulatory approach to evaluating and approving gene therapies for neurological and other rare disorders” 20′ presentation by Marta Kollb-Sielecka (European Medicines Agency) Click here to register!
Click here fore more information on the other episode of the series and to see the full schedule!
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If you missed a webinar, don't panic! All our webinars are recorded and made available on our website. |
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04 June 2024, 3 - 4 pm CET
Genetic Testing in Ataxias and HSP - in whom, when and how Delivered by Rebecca Schüle, Ludger Schöls (University Hospital Heidelberg & University Hospital Tübingen, Germany)
25 June 2024, 3 - 4 pm CET
Autoimmune parkinsonism Delivered by Jeroen Kerstens (Antwerp University Hospital, Belgium)
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ERN-RND is happy to announce that they are organising a Spring School “DBS in Dystonia” on 17-19 April 2024, which will be held online.
Day 1: 17 April 2024 – Indications and Diagnosis
Day 2: 18 April 2024 – How to do DBS/ Neurosurgery
Day 3: 19 April 2024 – Troubleshooting and Cases
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The international congress dedicated to neuromuscular science, MYOLOGY 2024, will take place in PARIS on April 22th-25th, 2024. This 8th edition is expected to gather about 1,000 delegates from all over the world. In the wake of our past successful congress Myology 2022 in Nice, we look forward to welcoming even more participants in the capital city of France.
A few weeks before the Olympic Games, we will have more than ever the opportunity to highlight how our knowledge arising from neuromuscular diseases can lead to innovations also benefitting the general public. We will also have a global overview of the latest advances in muscle science with a specific focus on disease-modifying therapies and medical breakthroughs.
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The 12th edition of the European Conference on Rare Diseases and Orphan Products (ECRD), for which EJP RD is a partner, will take place on 15-16 May 2024, both online and in Brussels! It will be held as an official event under the auspices of the Belgian EU Council Presidency. ECRD is the largest patient-led, rare disease policy-shaping event held in Europe, aimed at identifying key priorities to forge a unified approach for the next EU legislative cycle.
The in-person registration is sold out but it's still time to register online! Register now !
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The 10th annual congress of the European Academy of Neurology will take place in Helsinki, the capital of Finland, on 29 June – 2 July, 2024. a great opportunity for networking, learning, and sharing expertise. If you're planning to attend, be sure to register early and make your travel arrangements in advance to make the most of this prestigious event.
We will have a booth to represent EURO-NMD, It's a valuable opportunity to engage with attendees, share information about EURO-NMD's activities, and foster collaborations and partnerships with other professionals and organizations in the neurology community, more information to come!
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The 57th annual European Human Genetics Conference will take place in Berlin, Germany from Saturday June 1 to Tuesday June 4, 2024. The ESHG conference provides a platform for the dissemination of the most recent advancements in the field of human genetics, both scientifically and technologically. It also fosters the education of the upcoming generation of human geneticists. The scientific program reflects this broad scope, inviting the best speakers for the invited talks and concurrent symposia, selecting the best abstracts for oral presentations, completed by poster presentations and a set of educational sessions. The conference is a unique opportunity to meet, share results, build scientific projects and collaborations and get inspired, whatever your professional background in human genetics.
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The RYR-1 Foundation is Requesting Letters of Intent (LOI) for the Individual Investigator Research Grant Awards
Deadline: May 18, 2024 In celebration of Rare Disease Day, The RYR-1 Foundation is excited to announce that Letters of Intent (LOIs) for the Individual Investigator Research Grant Awards are open for submission on ProposalCentral. The Individual Investigator Research Grants will be awarded in early 2025. LOIs are due by May 18, 2024. You will be notified of your status by June 1, 2024. For any additional questions please contact Patricia Raffaele at patricia@ryr1.org. The final deadline for full grant applications is October 19, 2024. |
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The first release of CPMS 2.0 desktop version is approaching! We are delighted to give you access to the demo version of CPMS which has an interface for Administrative personnel (Admin) and another for Clinicias (Care). The new CPMS was built to serve the simplicity of use that clinicians need and solve many of the hurdles raised by the previous version. The new quick guide for clinicians is a trick card quick guide that you may want to look at when you first log into the new CPMS 2.0 and you can find it here: CPMS 2.0 Quick Guide for Clinicians. There is the possibility of logging into the demo version of CPMS and ask for access and also to attend the dedicated webinars that were prepared by the Commission to learn about the innovations and functionalities available.
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