Webinars

EURO-NMD provide educational webinars on a monthly basis to increase the knowledge around different specialist areas related to the neuromuscular field. Each webinar lasts approximately one hour with the opportunity for viewers to ask questions on the subject area.

The recordings and slides will be available on the EURO-NMD website for viewers to refer to or in case someone who has expressed an interest is unable to make the live webinar.

As part of a close working relationship between EURO-NMD and RD-Connect three informative webinars were organised for those researchers involved in ERNs. Recording of these three webinars can now be found below.

We are also collaborating with the European Reference Network for Rare Neurological diseases (ERN-RND) and the European Academy of Neurology (EAN). You can also view webinars from ERN-RND listed below (and on their website by clicking here) and we will include more information on how to register for these webinars in due course.

If you have a particular subject you would like to present about please contact Antonio Atalaia who will find a suitable date and time.


Click here to see the list of upcoming Euro-NMD webinars

 


Next webinar will be held on 20 May 2021

MUSCLE AND AGEING

organised by EURO-NMD,

This Euro-NMD webinar, organised in collaboration with ERN-RND Rare Neurological Disorders and the European Academy of Neurology, is about Muscle and Ageing.
It is delivered by Gillian Buttler-Brown who has a special interest and extensive research work published on the subject (namely papers with PMIDs: 30216693, 28585053, 28382740, 27515675, 26461311, 25532418, 25405809, 23722256, 23624703, 18801052).

Click here to register for the webinar

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Past webinars

Below are details of the past webinars we have organised. Where possible we have included a recording of the webinar in this section.

Next European Reference Network for Rare Neurological Diseases joint webinar with Euro-NMD ERN for rare neuromuscular diseases and the European Academy of Neurology
is entitled: MR Biomarkers in Spinocerebellar Ataxias.
It takes place on the 13th April, 15-16h CET
Delivered by
Gülin Öz
Professor, PhD @Medical School, University of Minnesota, Minneapolis, USA
Following BS degrees in Physics and Chemistry and a PhD in Biochemistry, Gülin Öz continued with postdoctoral training at the CMRR where she later joined the faculty. She uses high field, multi-nuclear magnetic resonance spectroscopy (MRS) to explore neurochemical and metabolic alterations in diseases that affect the brain and spearheaded utilization of neurochemical profiles to assess cerebral changes in patients with neurological diseases and their response to treatment.


Delivered by: Melanie Quintana

Description: We describe a Bayesian repeated measures model based on quantitative muscle strength data from a prospective Natural History Study at the NIH that was developed to determine disease progression and design clinical trials for GNE myopathy, a rare and slowly progressive muscle disease. The GNE disease progression model can be used to better understand natural disease progression, to guide decision making for key clinical trial design parameters, and to provide an analysis method for determining if a novel therapy is effective in altering disease progression.

Bio: Melanie Quintana is a Senior Statistical Scientist at Berry Consultants, where she specializes in designing Bayesian adaptive clinical trials across a wide range of therapeutic areas. Her work includes numerous examples in designing platform trials and clinical trials in rare and progressive disease with a focus on developing models of disease progression to design better and more powerful clinical trials. Before joining Berry Consultants, she earned her Ph.D. in Statistics from Duke University and went on to pursue a Postdoc in Biostatistics at The University of Southern California.

The webinar is moderated by: Michela Onali, a patient representative from “Gli Equilibristi HIBM”, also member of ERN Euro-NMD’s ePAG, Education Board, Muscle Working Group and Guidelines Core Group.


23MAR 2021 15:00-16:00 CET

Challenges in Frontotemporal Dementia: clinical, genetic and pathological heterogeneity’​ by Harro Seelaar

The speaker is Neurologist and Postdoctoral researcher in the Department of Neurology at the University Medical Center Rotterdam, the Netherlands. His expertise and research focus are in the field of Alzheimer’s disease and frontotemporal dementia.

Organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) in collaboration with the Neuromuscular Diseases ERN (ERN EuroNMD) and the European Academy of Neurology (EAN).


Telemedicine in NMD: state of the art

Delivered by: Sabrina Sacconi and Gabriele Siciliano

Sabrina SACCONI is Professor of Neurology at Nice University Hospital (France), now recognized as Reference Center for rare Diseases.
Pr. SACCONI starts to practice medicine in 1997 at Pavia in Italy and becomes specialist in neurology in 2003. From 2004 to 2008, she begins a European career and constantly improves her competences and understandings on neuromuscular disorder. In 2010, she obtains a PhD in cell physiology and biology with a work on genetic and epigenetic of facioscapulohumeral muscular dystrophy. In 2012, she obtains an accreditation to supervise research in Nice and becomes full University Professor in 2014 for the Nice UHC.
Since then, she is Head of the department « Peripheral Nervous System and Muscle ». She is also coordinating a basic research team at IRCAN Institute of Research on Cancer and Aging and working on the suppling of several databases and biobank on rare neuromuscular diseases.The main research topic of Prof. Sacconi is the development of new therapeutic strategies on neuromuscular diseases based on the understanding the role of genetic, epigenetic, endocrine and immune system deregulation in the progression of these diseases.

 

Gabriele SICILIANO

Present position: Full Professor in Neurology, Department of Clinical and ExperimentalrnMedicine, University of Pisa. President of Italian Association of Myology (AIM), since 2015 to date.

Academics and Professionals: Degree in Medicine: University of Pisa,l 27/6/1980, cum laude.rnSpecialization in Neurology: University of Pisa, 15/11/1984, cum laude, Thesis: “Methods of clinical evaluation of motor function in Duchenne Muscular Dystrophy”. Specialization in Physical and Rehabilitation Medicine: University of Pisa, 21/7/1992, Thesis: “Muscle metabolic aspects of fatigue in normals as evaluated by means of Phosphorus31 Spectroscopic Nuclear Magnetic Resonance during submaximal contraction”;. PhD in Neurological and Neurosensorial Sciences (University of Ancona, 2/10/1990), Thesis: “Central and peripheral mechanisms of muscle fatigue in normals and in neuromuscular diseases”. Post-Doctoral Research in Neurosciences: University of Ancona, from 16/9/1991 to 15/9/1993. Neurologist Assistant Register: at Neurological Clinic, University of Pisa, from 1993 to 1997. University Researcher Department of Neuroscience, University of Pisa from 1997 to 2001. University Associated Professor in Neurology (MED/26). Department of Clinical and Experimental Medicine, University of Pisa from 2001 to 2015. Research activities and interests: Since 1993 he is responsible for the Unit of Neuromuscular Diseases and for the Laboratory of Molecular Diagnosis in the former Department of Neuroscience, now Department of Clinical and Experimental Medicine – Neurological Clinics – University of Pisa, with main interests in clinical, laboratory and molecular aspects of neurodegenerative and neurogenetic disorders, acquired and genetic diseases of peripheral nervous system and skeletal muscle. These activities are conducted in collaboration with some overseas centres and laboratories. Since 1986 he has been engaged in studies on muscular dystrophies, metabolic diseases of muscle and motorneuron diseases. In particular,he has studied several issues on muscle fatigue, in collaboration with the Muscle Research Centre, University of Liverpool (Prof. RHT Edwards), exercise in normal and myopathic subjects, motorneuron output evaluation in amyotrophic lateral sclerosis, subsarcolemmal excitability in myotonic syndromes and muscular dystrophies, analysis of metabolic parameters in McArdle’s disease and mitochondrial myopathies. In the same period he has been engaged in epidemiological and therapeutical studies on neuromuscular disorders, in particular the use of selenium in Steinert disease, idebenone in mitochondrial myopathies, mexiletine in congenital myotonia, TRH and riluzole in amyotrophic lateral sclerosis. As far as mitochondrial myopathies are concerned, he is currently studying the effects of aerobic training programs, the relationship between metabolic and catecholaminergic systems during exercise, the pathogenic role of mitochondrial transcription factors, the diagnostic usefulness of magnetic resonance spectroscopic techniques. Furthermore, he is working on the possible role of mitochondrial involvement and oxidative stress in the pathogenesis of neurodegenerative disorders. All these activities have led to a scientific production volume represented by near 300 full papers, in specialized cited international journals, dealing with the above indicated arguments, funded projects from Institutional and Charity bodies, responsibility in research evaluation committees for public and private funding research bodies, participation to national and international clinical trials performed according to GCP (last GCP training certificate obtained in 19 February 2016).

He has been the Coordinator of the nation−wide Italian collaborative network established in 2009 (granted by Telethon-UILMD GUP09004), that has already developed a web-based registry of patients with mitochondrial diseases. They have collected 1400 patients, with onset of the disease in both adulthood and in childhood.


Next ERN-RND joint webinar with Euro-NMD and European Academy of Neurology

9 March, 15-16h CET
Speaking Belén Pérez Dueñas Of Vall d’Hebron University Hospital, Barcelona, Spain

Chaired by Marina de Koning-Tijsse, University Medical Centre Groningen, the Netherlands


By Prof Antonio Toscano, Neurologist and Neuromuscular Expert, Dean of the Medical Faculty of the University of Messina, IT

Prof. Toscano scientific activity has been mainly developed in neurogenetic diseases with specific reference to neuromuscular and neurodegenerative disorders

In fact, he is particularly dedicated to the diagnosis, management and treament of:
1) Metabolic myopathies as muscle glycogenoses (with particular interest in Glycogenosis type II – Pompe disease), lipid storage myopathies and mitochondrial disorders,
2) Genetic myopathies (limb-girdle syndromes, distal myopathies, channelopathies, cardiomyopathies, congenital myasthenia),
3) Peripheral neuropathies (particularly, disimmune and genetic neuropathies)
4) Neurodegenerative diseases (i.e., cerebellar ataxias and spastic paraparesis).

He is also author of over 160 publications in indexed journals (see list of pubblications).

He is member of the Editorial Board of: 1) Neuromuscular disorders, 2) Journal of Neuromuscular diseases and a reviewer for many high impact publications, besides having an extensive list of publications on his area of expertise.


Date: 9 February 2021, 3-4pm CET

Speaker: Amy R. Viehoever, Washington University, Saint Louis, USA

Venue: Zoom (online)

You can sign up here.

More information about ERN-RND webinars in collaboration with EURO-NMD and the European Academy of Neurology (EAN) can be found here.


Next ERN-RND joint webinar with Euro-NMD and the European Academy of Neurology is on 26 Jan 2021 at 3:00 PM (CET)

Delivered by Günter Höglinger, Medical University Hannover

 


Myotonic Dystrophy’s CNS manifestations are most incapacitating and Dr Gallais has spent many years researching effects of symptoms like apathy, fatigue and sleepiness to improve their management and improve these patients’ quality of life.

Dr Benjamin Gallais, ÉCOBES – Recherche et transfert, Cégep de Jonquière

Also: Groupe de recherche interdisciplinaire sur les maladies neuromusculaires (GRIMN), CSSS de Jonquière and Centre de recherche Charles-Le-Moyne, Faculty of Medicine and Health Sciences, Université de Sherbrooke, QC, Canada.

Webinar organized by Euro-NMD  in collaboration with ERN-RND and European Academy of Neurology.

Click the image below to watch the recording of this webinar.


This Webinar has been delivered by Prof Isabel Leite, University of Oxford, UK on Thursday 10 December 16:00 (Paris Time)

This is part of a joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).


Educational webinars on Neurorehabilitation jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Christos Ganos is a neurologist and senior lecturer at the Movement Disorders and Neuromodulation Unit at the Charité, University Medicine in Berlin. His clinical and research focus is on: movement and neurodegenerative disorders.


Educational webinars on Neurorehabilitation jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Gessica Vasco is Pediatric Neurologist at the Department of Neurosciences and Neurorehabilitation, Ospedale Pediatrico Bambino Gesù, Rome, Italy. Her special research focus is on Neuromuscular and Neurogenetic Disorders in childhood.

Susanna Summa is a researcher at the Department of Neurosciences and Neurorehabilitation, Ospedale Pediatrico Bambino Gesù, Rome, Italy. Her main research activities are focused on neuroscience, natural user interface and neurorehabilitation.


This webinar was delivered by Dr Sithara Ramdas. Sithara is a Consultant Paediatric Neurologist and an Honorary Senior Lecturer University Of Oxford Oxford University Hospitals NHS Foundation Trust John Radcliffe Hospital.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).


Please note: This webinar was delivered on 19th November 2020


Educational webinars on Neurorehabilitation jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Ludger Schöls is a Professor of Neurology, Head of Clinical Neurogenetics, Centre of Neurology, University of Tübingen, Germany and Clinical coordinator of the European Reference Network on Rare Neurological Diseases (ERN-RND). His research group focuses on translational research in neurogenetic diseases such as cerebellar ataxia and hereditary spastic paralysis (HSP).


Educational webinars on Neurorehabilitation jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Bart van de Warrenburg is a neurologist from the Radboud University Medical Centre in Nijmegen, the Netherlands. He is an expert on ataxia and has special interest in rare and genetic movement disorders.

This webinar took place on 3rd November 2020.


This webinar was delivered by Drs Anita Beelen and Esther Kruitwagen-van Reneen – Neuromuscular diseases in the University Medical Center Utrecht in the Netherlands.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

This webinar took place on 29th October 2020


Educational webinars on Neurorehabilitation jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Bernhard Landwehrmeyer is a Principal Investigator Enroll-HD, Past Chairman of the Executive Committee of EHDN, Director of the HD-Center Ulm and Full Professor of Neurology at the University Ulm, Germany.


This webinar was part of a joint series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

It was delivered by Juan Dario Ortigoza-Escobar who is a pediatric neurologist from the Hospital Sant Joan de Déu in Barcelona, Spain. He is an expert in movement disorders (dystonia, Parkinsonisms, choreas, tremors, myoclonias, tics/Tourette syndrome, deep brain stimulation).

This webinar was delivered on 13th October 2020

 


Educational webinars on Neurorehabilitation jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Annemieke Buizer is Full Professor for Rehabilitation Medicine at the Amsterdam Research Institute for Movement Sciences. Laura Bonouvrié is specialist in Rehabilitation medicine at the Amsterdam University Medical Center- Research Institute for Neuroscience – Cellular and Molecular Mechanisms.


oint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Rebecca Schüle is neurologist and associate professor at the University Tübingen Germany and expert on Hereditary Spastic Paraplegia. She is leading the research group „Genomics of rare movement disorders“ at the Hertie Institute for Clinical Brain Research . She is also the coordinator of the network TreatHSP.


Educational webinars on Neurorehabilitation jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Hortensia Gimeno is a Clinical Research Fellow at NIHR and PhD Candidate at King’s College London and Consultant Occupational Therapist at Guy’s and St Thomas’ NHS Foundation Trust.


This webinar was be delivered by Annemieke Aartsma-Rus, who is a Professor of Translational Genetics, Department of Human Genetics, Leiden University Medical Center in the Netherlands.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Annemeike briefly introduces the basic concepts of different genetic therapies (gene addition, genome editing, splicing modulation and transcript readthrough). Duchenne is used as a paradigm since all these approaches are in development. However, the webinar also takes into account challenges and considerations for applying these approaches broader to other NMDs.

 


Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Ferdinando Squitieri is a Neurologist with a PhD in Neurobiology. He has been studying and treating patients with Huntington’s disease and juvenile onset Huntington’s disease over the last 30 years. Ferdinando Squitieri is Head of the Huntington and Rare Diseases Unit at Fondazione IRCCS Casa Sollievo Sofferenza Research Hospital in San Giovanni Rotondo and Head of the Neurology Department at CSS-Mendel Institute in Rome. His main line of research focuses on clinical, genetic and imaging changes in Huntington’s disease.


Educational webinars on Neurorehabilitation jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Gál Ota is a physiotherapist at the Department of Neurology at the General University Hospital in Prague, Czech Republic. He has special expertise in neurorehabilitation, musculoskeletal disorders and gait analysis.


Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Speakers: Zsolt Cséfalvay, PhD, professor and head of the Department of Communication Disorders at Comenius University, Bratislava. Special expertise and research focus: aphasia, progressive language disorders, neurogenic communication disorders. Robert Rusina, Head of the Department of Neurology, Charles University Thomayer Hospital, Prague. Special expertise and research focus: progressive aphasia, frontotemporal dementia, prion disorders, cognitive neurology.


This webinar was delivered by Janneke Hoeijmakers in August 2020. Janneke is a medical advisor for the diagnosis group small fiber neuropathy of the Dutch patients organization for neuromuscular disorders (Spierziekten Nederland) and board member of the Dutch Neuromuscular Center.


Janneke studied medicine at the VU University Amsterdam, after which she followed her training as a neurologist at Maastricht UMC +. Since the start of her education in 2010, she has been engaged in research into painful neuropathies in close collaboration with the University of Yale (Prof. SG Waxman) and the Carlo Besta Institute in Milan (Prof. G. Lauria). In 2014, she defended her dissertation on the role of sodium channel mutations in patients with small fiber neuropathy. An article from her thesis was awarded the Princess Beatrix Spierfonds annual prize for the best neuromuscular article published in 2012. Since January 2016, Janneke works on neuromuscular disorders in Maastricht UMC+. In addition to research in the field of painful neuropathies, she is involved in myotonic dystrophy. Medical advisor for the diagnosis group smallfiber neuropathy of the Dutch patients organization for neuromuscular disorders and board member of the Dutch Neuromuscular Center.


Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

This webinar took place 20th August 2020

 


This webinar was delivered by Olivier Scheidegger from the Bern University Hospital/University of Bern in Switzerland.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

This webinar took place 23rd July 2020.


Gait rehabilitation in people with hereditary spastic paraplegia was delivered by Jorik Nonnekes, MD PhDRadboud University Medical Centre, Nijmegen Donders Institute for Brain, Cognition and Behaviour Centre of Expertise for Parkinson & Movement Disorders Department of Rehabilitation Nijmegen, The Netherlands.

Respiratory physiotherapy in Parkinson’s plus syndromes was delivered Martin Srp, Charles University and General University Hospital, Prague, Czech Republic.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

This webinar took place 14th July 2020.


This webinar was delivered by Robert-Yves Carlier from University Hospital Raymond-Poincaré APHP in France.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-Euro-NMD) and the European Academy of Neurology (EAN).

 


This webinar was delivered Karim Wahbi who is Professor of Cardiology at the University of Paris, France and head of the reference centre for neuromuscular cardiomyopathies in Cochin Hospital, Paris. He completed his cardiology internship and residency at the University of Paris Descartes. He specialises in the clinical management of patients with cardiomyopathies with a specific expertise in neuromuscular diseases. Key areas of clinical and fundamental research for Pr. Wahbi are the prevention of heart failure and sudden death, the study of molecular mechanisms underlying cardiomyopathy and development of innovative therapies in patients with neuromuscular conditions.

This webinar gives a global overview of cardiovascular involvement in neuromuscular conditions, its impact on patient prognosis and the potential preventives approaches that can be implemented. A number of specific neuromuscular cardiomyopathies will be presented in detail, including those observed in patients with Duchenne muscular dystrophy, myotonic dystrophy type 1 and laminopathies .

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

This webinar took place on Tuesday 26th May 2020

 


Giovanna Zorzi is a pediatric neurologist from the Foundation I.R.C.C.S – Institute of Neurology Carlo Besta, Milan, Italy . She is an expert in pediatric movement disorders.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

 


This webinar was delivered by Nicole Voet from Klimmendaal – Polikliniek Neuromusculaire Aandoeningen in the Netherlands.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).


To compliment this webinar Nicole has developed this PDF of further information about exercising with a neuromuscular disease.


Nicole Wolf is a child neurologist at the Center for Childhood White Matter Disorders, VU University Medical Center, Amsterdam, the Netherlands. Nicole does research in leukodystrophies: metachromatic leukodystrophy and hypomyelinating leukodystrophies.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).


This webinar was presented by Wassilios Meissner from University Hospital Bordeaux, Institute of Neurodegenerative Disorders.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).


Marc Engelen is a Pediatric Neurologist from the University Medical Center in Amsterdam, the Netherlands. He is an expert on adrenoleukodystrophy and other neurodegenerative diseases.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

 


Tobias Bäumer is a Professor of Neurology and Head of the Experimental Neurophysiology, Paediatric and Adult Movement Disorders and Neuropsychiatry Group at the Institute of Neurogenetics, University of Lübeck, Germany.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).


This webinar will be presented by Professor Robert McFarland from Newcastle University in the UK.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).


Martin Paucar Arce is a neurologist from the Karolinska Institutet in Stockholm, Sweden, specialized in movement disorders.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).


This webinar was delivered by Professor Kailash Bhatia of Clinical Neurology in the Department of Clinical and Movement Neuroscience at the Institute of Neurology, UCL, Queen Square, London. Kailash is an expert in movement disorders, like Dystonia, Parkinson’s disease and atypical parkinsonian syndromes.

Recording of this webinar will be made available shortly.

This is part of a joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).


Nicole Wolf delivered this webinar. She is child neurologist at the Center for Childhood White Matter Disorders, VU University Medical Center, Amsterdam, the Netherlands. Nicole does research in leukodystrophies: metachromatic leukodystrophy and hypomyelinating leukodystrophies.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).


The webinar was presented by Jan Lewerenz who a is neurologist, University Hospital Ulm, Germany.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).


This webinar was delivered by Paola Giunti who is a Principal Clinical Research Associate in the Department of Molecular Neuroscience at UCL, Institute of Neurology at UCL, UK. Her clinical and research interests are in neurogenetics, neurodegenerative diseases and neurorehabilitation with particular focus on ataxia.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).


The webinar was presented by Alfons Macaya, Hospital Universitari Vall d’Hebron, Paediatric Neurology, Barcelona, Spain.

The recording of this webinar will be available here shortly in the meantime you can view the slides here.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).


Pr. Olivier Benveniste delivered the 45 minute webinar which was recorded.

The webinar took place at 13:00-14:00 (London) 14:00-15:00 (Paris) on 5th December.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

 


The webinar was presented by Adrian Danek, Ludwig Maximilian University, Cognitive Neurology, Munich, Germany.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

 


This webinar took place – 13:00-14:00 (London) / 14:00-15:00 (Paris) 21 November 2019

It was presented by Pr. Benedikt Schoser, Friedrich-Baur-Institut, Munich, Germany

We would like to take this opportunity to thank Benedikt for delivering this presentation and allowing us to include it here on our website.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

 


The webinar will be presented by Bart van de Warrenburg who is a neurologist from the Radboud University Medical Center, Nijmegen, the Netherlands who is an expert on ataxia and has special interest in rare and genetic movement disorders.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

This webinar was organised by ERN-RND.


This webinar was delivered by Pierre Carlier from the Institut de Myologie on 24th October 2019.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).


The CPMS webinar was presented by the CPMS Support DG SANTE looked at questions which are frequently asked by CPMS users.

The webinar took place on 23rd May at 14:00 (CET)

Download a recording of this webinar.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).


This webinar was delivered on Thursday 18th April 2019 by Professor David Adams from Bicêtre, Paris.

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).


EURO-NMD delivered a webinar presented by Dr Emilien Delmont on the subject of Diagnosis and treatment of CIDP associated to antibodies against node of Ranvier, the details are below.

The webinar took place on Thursday 21st March 2019 at 13:00-14:00 (GMT).

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

 


Marco Roos, Leiden University Medical Center, The Netherlands
Wednesday 26 September 2018

This video will explain what makes data Findable, Accessible, Interoperable and Reusable (FAIR) and why it is critical that different types of information, such as medical records, clinical and phenotypic data, test results, sequencing data and biosample details are made FAIR at the source.


Mary Wang, Fondazione Telethon, Milan, Italy
Tuesday 18 September 2018

This video demonstrates how to use two tools that will help you quickly identify patient registries in Europe and beyond that hold data on your disease of interest. They also let you find rare disease biobanks and browse their sample collections, with detailed information about each individual sample.


Steven Laurie, Centro Nacional de Análisis Genómico, Barcelona, Spain
Thursday 6th September 2018

This video will demonstrate how to use the powerful and user-friendly analysis tools in the GPAP to interpret, filter and prioritise your variants to identify disease-causing mutations and help diagnose your rare disease patients. The system also allows you to compare your data with data submitted by other members of the RD-Connect community, and further afield, to find confirmatory cases for your candidate variants.



Logistical information

EURO-NMD use Zoom Webinar software to ensure the webinars run smoothly for the one hour duration. Some of the features that Zoom offer are:

  • Up to 100 live participants. A link for a YouTube live webcast is posted on our twitter account @euro_nmd 1 hour prior to the webinar beginning, allowing participants that encounter difficulties in logging to Zoom to wach the webinar streaming on YouTube.
  • The pannelists have Mute/Unmute options
  • The pannelists are able to share their screen
  • Webinar recording is done and it will be made available online to watch on-demand both at our website https://ern-euro-nmd.eu/webinars/ and on the EURO-NMD YouTube Channel. You can subscribe to the latter to keep updated on our webinars content.

When performing webinars one or more members from the Coordination Team will be present to assist if there are any technical issues. There will also be the offer of a 5-10 minute session before the webinar so the presenter can learn the different controls and options and so they have adequate time to set up.

The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission

“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit ec.europa.eu/health/ern