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The ERNcare4ua website has recently launched a EU Survey to monitor the care delivered by ERNs to Ukrainian refugees.
Despite the Coordination Team's best efforts to report all cases coming to our knowledge, we would encourage each HCP to do their report directly by using the survey address below. Thank you for your collaboration, as it will support the role of the ERNs in this difficult period of our common history.
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Survey for patients: Unmet needs of rare and complex diseases related to pregnancy and family planning for patients and caregivers : (Available in 8 languages)
Now available in portuguese !
ERN Euro-NMD is participating in a transversal cross-ERN Study Group on Pregnancy and Family Planning in Rare, low prevalence and complex diseases.
The resulting surveys have the aim of collecting Europe - wide evidence on the management of this specific condition and bringing crucial added value in the lives of RD patients across Europe.
Completing and / or disseminating the survey is a great opportunity for you all to contribute to the important topic of pregnancy and we really appreciate your feedback.
If you would be so kind to also share these with European-based patients and patient organisations, that would be most helpful.
📢 The deadline has been extended to June 15th!
FEW MORE DAYS...
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In April 2022, 33 patient representatives from 23 patient organisations and 11 countries are involved in EURO-NMD. What is the role of patient representatives? Euro-NMD patient representatives represent the voice and interest of their patient community and act as the bridge between this community and Euro-NMD. They take part in specialist disease groups, cross-cutting specialist groups and advisory boards. They can also become members of the Patient Advisory Board, which coordinates patient involvement in the network. See patient participation in Euro-NMD.
How to become a Euro-NMD patient representative? ...
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UPCOMING Euro-NMD 2022 WEBINARS
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JUNE 2022
Thursday June 16th – 16:00-17:00 Paris time
"Jaw malformations and teeth malpositions in Neuromuscular Disease" Delivered by Dr. Stavros Kiliaridis
Professor and Chairman of Orthodontics at the University of Geneva (1999-2021), Dr. Stavros Kiliaridis graduated from the Aristotle University of Thessaloniki, Greece. He received his PhD from Göteborg University, Sweden, where he also completed his specialist education in Orthodontics and worked as Associate Professor.
Dr.Kiliaridis' research is focused on masticatory muscle influence on dentofacial growth, post-emergent phases of tooth eruption, diagnostic methods of oral function, dentofacial aberrations in individuals with Neuromuscular Diseases, outcome of different orthodontic interventions, side effects linked to orthodontic treatment.
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If you missed a webinar, don't panic! We record all our webinars and they are available on our website. |
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Tuesday 21 June 2022, 3-4pm CET
Biofluid biomarkers in atypical parkinsonism by Per Svenningsson
The speaker is Professor and research group leader at the Department of Clinical Neuroscience at the Karolinska Institute in Stockholm, Sweden.
Friday 24 June 2022, 10-11am CET
Caring HD: the experience of the French National Reference Centre by Anne-Catherine Bachoud-Lévi & Katia Youssov
Anne-Catherine Bachoud-Lévi is Professor at the School of Medicine, University Paris-Est and clinical expert at the National Reference Center for Huntington's Disease, Henri Mondor-Albert Chenevier Hospital. Furthermore, she leads the team 'Interventional Neuropsychology' at the Mondor Institute of Biomedical Research in Paris, France. Katia Youssov is a senior consultant at the Department of Neurology at the Henri-Mondor Hospital, Paris.
Tuesday 28 June 2022, 3-4pm CET
Magnetic resonance imaging in the diagnostic assessment of cerebellar ataxias by Jennifer Faber
The speaker is Neurologist, study physician at the german center for neurodegenerative disorders (DZNE) in Bonn, Germany.
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Patient-Oriented Research: Building Patient and Researcher Capacity
The Neuromuscular Disease Network for Canada (NMD4C) and Muscular Dystrophy Canada (MDC) are pleased to invite you to a webinar on patient engagement in research. This webinar is primarily targeted at Canadian clinicians, academics, and trainees with an interest in neuromuscular disease.
NMD4C and MDC are providing organizational and technical support.
Date 📅 July 5th, 2022 I Time ⌚️ 17:00 - 18:00 ET I Labels 📚 CPD-Accredited
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The 8th EAN Congress is an European meeting that brings together neurologists and neuroscientists with the aim of networking and exchanging knowledge to address the biggest challenges in neurology. They have planned a meeting with a pan-European flavor, celebrating the opportunity to meet once more in person in a hybrid meeting that will also maximise virtual participation. It will take place on June 25 to 28, 2022 in Vienna, Austria !
Come and meet us face-to-face and discover all our projects at booth X526 in exhibition Hall X5!
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ICNMD is organising their 17th Congress focussing on neuromuscular diseases to be held from 5th to 9th July 2022 in Brussels in Belgium. The aim of the ICNMD Congresses is to offer attendees an updated view on neuromuscular disorders and that networking opportunities increase their international experience and collaborations. The scientific and program committee are invited from all continents around the world to enable this wide spectrum.
ERN EURO-NMD will hold a face-to-face Board Meeting at ICNMD !
Register here https://icnmd.org/registration2022/
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ENMC has a unique concept of facilitating and organising workshops initiated by experts in the field of neuromuscular conditions. Workshop proposals can be submitted to ENMC twice a year and the ENMC Research Committee judges these workshop applications on scientific quality, timing, relevance and list of participants. The ENMC Executive Committee decides which applications can be developed towards and executed as an ENMC workshop.
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The ECRD is recognised globally as the largest, patient-led rare disease policy event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place.
Here are the 3 main topics of the conference: - Good health and well-being
- Reduced inequalities
- Industry, innovation & infrastructure
11th European Conference on Rare Diseases & Orphan Products (ECRD 2022), to be held online from 27 June to 1 July 2022.
More infos : https://rare-diseases.eu
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The World Muscle Society is delighted to invite you to attend the 27th International Hybrid Annual Congress of the World Muscle Society that will take place 11th – 15th October 2022, in Halifax, Nova Scotia, Canada. The congress venue is the Halifax Convention Centre at 1650 Argyle Street, in the heart of this Atlantic seaport. They will also be making the presentations and e-posters available via their platform and app for delegates who wish to attend virtually. They are working hard to ensure that the registration process is as flexible as possible as we all navigate these ever changing and uncertain times. Contributions about new advances across the neuromuscular field are very welcome. The main thematic topics that will be addressed in the plenary sessions are : 1. New Developments in Congenital Muscle Disease 2. Neuropathies and Non-5q Motor Neuron Disease 3. The Development of Therapeutic Approaches
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Professor Michelangelo Mancuso is organising this summer school as Scientific Director. This summer school will offer a high level, intensive educational program carried out by an excellent international faculty to 40 Ph.D. students, postdoc fellows and residency's students in genetics and neurology.
The main aim of the school is to bring together junior European fellows and expert investigators working on different aspects of Rare Neurological Diseases, from clinical perspectives to multiomics approaches, and to provide a forum for new directions and ideas in RNDs field.
The meeting will combine research lectures by leading neuroscientists from Europe and aims to encourage active discussions and exchange of information and ideas between seniors and young fellows.
ERN EURO-NMD endorses this summer school.
👉 More infos here ! 👈
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Message from DDF. We are pleased to send you herewith a message from our partner in the EURO-NMD Registry project: The Duchenne Data Foundation (DDF), an organisation that brings together all sources of data related to dystrophinopathies and is fully committed to making Duchenne resources FAIR. "DDF would like to invite you to subscribe to their monthly News Bites to receive updates about their projects, activities, and events. If you wish to subscribe, please click here. You can also stay in touch with them through their social media platforms, Facebook, LinkedIn and Twitter! We are looking forward to seeing you on our subscribers list! The Duchenne Data Foundation Communication Team"
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Message from ENMC.
Because it is essential to hear not only the opinion of the workshop participants but also your opinion, a questionnaire has been developed for healthcare professionals. This questionnaire asks for your ideas about psychological support for people with a neuromuscular disorder.
Some of the topics covered are: when is psychological support needed, how can it be applied to neuromuscular disorders, and access to psychological support. The results of this questionnaire will be presented during the workshop. It would be of great importance to us if you would complete the questionnaire. Filling in the questionnaire takes approximately 15 minutes.
If you want to fill in the questionnaire directly, you can do so via the following link 👉 English: https://lnkd.in/eS3uymhi
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