|
|
| |
We are pleased to announce that the EURO-NMD Registry, part of the ERN EURO-NMD, has officially enrolled its first patient at the beginning of July 2024! The registry has been operational since January 2024, with four healthcare providers currently participating and two more in the process of finalising ethics approval. The EURO-NMD Registry serves both paediatric and adult patients across Europe who are diagnosed with or suspected of having a neuromuscular disorder (NMD). It is designed to achieve several key objectives in line with the broader aims of EURO-NMD: to improve the quality of care across the network, to support translational research and to facilitate clinical trials by collecting data from a large number of patients and providing regulated access to the data in accordance with a data access policy.
|
|
|
|
|
| |
We are delighted to announce that the 8th Annual Meeting of the European Reference Network for Rare Neuromuscular Diseases (ERN EURO-NMD) will take place from March 5 to 7, 2025 in Essen, Germany.
This event remains an essential platform for advancing research, sharing knowledge and promoting collaboration within the neuromuscular disease community.
More info to come, so stay tuned!
|
|
|
|
| |
| |
|
We are delighted to announce that Dr. Kleopas Kleopa has been appointed as the new Co-Chair of the ERN EURO-NMD Peripheral Nerve Diseases Working Group. Prof. Kleopa is a distinguished neurologist with long track record as a clinician-scientist with extensive expertise in neurological and neuromuscular disorders, neuroscience, and gene therapy. We are excited to have Dr. Kleopas Kleopa join our leadership team and look forward to the valuable insights and direction he will bring to the working group.
Please join us in welcoming Prof. Kleopas Kleopa to his new role in EURO-NMD!
|
|
|
|
|
|
| |
The basic course in neuropathology is meant for those who do not have the benefit of structured neuropathological training for and in their professional neuropathological activities.
The course is intended for trainees in general pathology, neuropathology, neurology or neurosurgery but also for neurobiologists and PhD students in neurological sciences. Specifically, for those who, in the course of their PhD research, will be involved with the neuropathology of, for example, neurodegenerative diseases, developmental diseases, brain tumours or white matter diseases.
The course is also intended for medical specialists from general pathology, neurology or neurosurgery, who would like to get more insight in the field of neuropathology.🗓️ 24 – 27 September 2024 📍 Aachen, Germany |
|
|
|
|
|
| |
On behalf of Mitocon and its Scientific Program Committee, we are pleased to announce the organization of the 14th Mitochondrial Disease Conference, which will be held on October 25-27, 2024 at the Best Western Hotel Galileo Padova.
As usual, the event will consist of two parts: the scientific meeting, 25-26 October and the patient and family meeting on Sunday 27 October. During the Scientific Conference, the participation of patients and families will also be encouraged. The Mito Conference 2024 aims to provide a comprehensive overview of the latest advances, challenges, and potential opportunities in the field of mitochondrial research. By covering diverse topics ranging from basic science to mitochondrial biology, with a focus on therapies and the role of artificial intelligence in mitochondrial medicine. Together, let’s light the way to a cure for all mitochondrial diseases!
Click here for the Programme!
|
|
|
|
|
|
| |
We are excited to announce a series of insightful webinars in honor of Mitochondrial Disease Awareness Month this September. Our webinars aim to educate, inspire, and connect individuals interested in learning more about mitochondrial diseases, the latest research, and ways to support those affected.
Thursday 19 September 2024 16:00-17:00 CEST "PMDs and pregnancy" delivered by Prof. Mika Martikainen (Professor of Neurology, University of Oulu and Chief Physician, Neurology, Oulu University Hospital, Finland)
Thursday 26 September 2024 16:00-17:00 CEST
"Melas and Melas-spectrum: clinical findings and therapeutic options" delivered by Prof. Serenella Servidei (Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Italy)
|
|
|
|
|
|
| |
October
Thursday 3 October 2024 16:00-17:00 CEST "Presentation of the new guidelines on ALS management" delivered by Prof. Dr. Philip Van Damme (UZ Leuven, Belgium)
Thursday 10 October 2024 16:00-17:00 CEST
"Update on ALS approved therapies" delivered by Prof. Dr. Andrea Calvo (AOU Torino, Italy)
Thursday 17 October 2024 16:00-17:00 CEST
"Management of relationships and sexuality in ALS patients" delivered by Rachael Marsden (Oxford University Hospitals, UK)
|
|
|
|
|
|
| |
If you missed a webinar, don't panic! All our webinars are recorded and made available on our website. |
|
|
|
| |
On September 21, 2024, ERN EURO-NMD will proudly support World Myositis Day, a global initiative aimed at raising awareness for myositis, a rare group of diseases that cause muscle inflammation and weakness. This day serves as a vital platform to highlight the challenges faced by those living with myositis and to advocate for better research, treatments, and patient care.
Why this day matters: - Myositis Awareness: Many people are unaware of this rare condition and its impact. World Myositis Day brings global attention to the need for better understanding and resources.
- Promoting Research: Advancing research is critical to discovering new treatments and improving the quality of life for those affected.
- Empowering Patients and Families: By raising awareness, we can build a stronger support network for patients, families, and caregivers.
This event is all the more important for us as our patient representatives are preparing a Patient Journey on Myositis which will be published very soon.
We invite you to join us in recognizing the resilience of the myositis community and to help spread the message. Together, we can make a difference in the fight against this disease!
|
|
|
|
|
|
|
| |
The World Muscle Society is a dynamic community that aims to promote, disseminate, and share all aspects of neuromuscular physiology and diseases, from basic science to patient care. It encompasses a broad range of scientists and healthcare professionals who share the common interest for neuromuscular disorders. The 29th Annual World Muscle Society Congress will be held in the beautiful city of Prague from October 8 to 12, 2024. The congress will once again be a hybrid event, offering the flexibility of virtual participation, but please feel free to attend in person to maximize the benefits of networking and scientific exchange. For this congress, they have chosen a theme centered on acquired myopathies. They hope this theme will broaden the traditional focus on inherited muscle diseases and bring new experts into our field of myopathies.
|
|
|
|
|
|
|
| |
Developing Therapies in Rare Neuromuscular Disease: A symposium by the Advisory Committee for Therapeutics 15th anniversary of the TREAT-NMD Advisory Committee for Therapeutics (TACT) Their first symposium by the Advisory Committee for Therapeutics will be a day filled with insightful talks, reflecting on the wealth of knowledge gleaned over the past 15 years of TACT’s operation. The symposium is designed for industry professionals involved in developing treatments for rare neuromuscular diseases and offers a unique opportunity to learn from past mistakes, engage with leading experts, and gain valuable insights into the challenges and opportunities within the field. Attendees can expect interactive sessions and opportunities to pose questions to the speakers, fostering meaningful dialogue and knowledge exchange. Tickets are now available! Don’t miss this unparalleled opportunity to celebrate 15 years of TACT and chart the course for future advancements in rare neuromuscular disease therapeutics.
🗓️ 31st October 2024
📍 Boston, USA
|
|
|
|
|
|
| |
The ERICA 4th General Assembly & ERN Research Conference will take place from December 11th to December 13th, 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. Deadline submission 1st October 2024.
|
|
|
|
|
| |
ERDERA opens a new era for rare disease research in Europe and beyond.
To leave no one behind, over 170 organizations championed by the European Union and member states are working together to make Europe a world leader in rare diseases research and innovation. The European Rare Disease Research Alliance (ERDERA) takes over EJPRD to deliver concrete health benefits to rare disease patients in the next decade by advancing prevention, diagnosis, and treatment research. With an overall estimated budget of 380 million euros, ERDERA is set to boost game-changing research, expediting the translation of the most promising results into socio-economic benefits for patients and healthcare systems, whilst fostering international and national alignment and collaboration. Read ERDERA’s press release to learn more 🗞️ https://bit.ly/3zgaZA0 Visit their website🌐 www.erdera.org
|
|
|
|
|
|
| |
In October 2024, the European Neuromuscular Centre (www.enmc.org) will host an international scientific workshop on exercise training in muscle diseases. This workshop will bring together experts and patients to discuss all aspects of training in neuromuscular disease, with the aim of providing guidelines for patients and carers. There will be an explicit focus on training to strengthen muscles or to maintain or improve fitness. Patient representatives from Spierziekten Nederland and EURO-NMD will take part in this workshop. They have developed a questionnaire to find out about your experiences of training with a neuromuscular disease and the obstacles you face. The results of this questionnaire will be presented during the workshop and used in a scientific paper. It will help to get a clear picture of the experiences and challenges of training with a neuromuscular disease, which can be taken into account when developing guidelines. It would be great if you could complete the questionnaire and share your experiences. The questionnaire is for adults (18+). It will take about ten minutes to complete and is open until 19 September 2024. The questionnaire is available here : https://ec.europa.eu/eusurvey/runner/ENMC_excersise_in_NMD (in English, French, German, Dutch, and Norwegian). Thank you for your cooperation!
|
|
|
|
|
| |
The French rare diseases network SENSGENE has created an innovative and didactic Serious Game called ADhoc. The aim is to raise awareness among healthcare professionals of all ages and specialties about best practices when announcing a diagnosis of rare diseases. Following the great success encountered in France, ERN-EYE, a European Reference Network dedicated to rare eye diseases is now launching the English version to benefit to a large number of professionals in Europe.
This serious game was scripted during focus groups by a committee of medical experts from the SENSGENE and ERN-EYE networks, including Pr Hélène Dollfus, coordinator of both networks. Patient associations and psychologists were also consulted to validate the content.
|
|
|
|
