COVID-19 Patient Survey

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      The Research board comprises 100+ people who expressed some interest in research issues. Priority has been given to establishing informing research-interested HCPs about upcoming research opportunities, in particular the Solve-RD project and the European Joint Programme for RD (EJP-RD).

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        • The Duchenne muscular dystrophy (DMD) research overview section of the TREAT-NMD website is regularly updated by Annemieke Aartsma-Rus and provides information about the different therapuetic approaches to DMD.

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      • Registry Hub for Rare Neuromuscular Diseases
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      • Recent publications
        • Survey on patients’ organisations’ knowledge and position paper on screening for inherited neuromuscular diseases in Europe
        • WMS Covid-19 Update
        • Reliability and agreement of a dynamic quadriceps incremental test for the assessment of neuromuscular function
        • A study of the phenotypic variability and disease progression in Laing myopathy through the evaluation of muscle imaging
        • Therapeutic Approaches to Treat Mitochondrial Diseases: “One-Size-Fits-All” and “Precision Medicine” Strategies
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  • COVID-19 – latest news
    • COVID-19 and NMDs – Latest news
      • EURO-NMD Board & Working Groups Meeting December 2020
      • Renin–Angiotensin–Aldosterone System Inhibitors in Patients with Covid-19
      • Rare disease community raises alert over discrimination in critical care guidelines during COVID-19 pandemic
      • COVID-19 and Neuromuscular Patients
      • Pulmonary Support for Myotonic Dystrophy Patients During COVID-19 Pandemic
      • COVID-19: Care Recommendations for Home-Based Ventilation Patients
    • COVID19 Surveys
      • COVID-19 Patient Survey
      • COVID-19 Hospital Survey
      • COVID-19 NMD Database
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2017 Posters

Consortium (NeMusChALS), an integrated highly specialized and collaborative structure for clinical expertise, care and translational research for neuromuscular diseases from childhood to adulthood.


E-Health and Innovation to overcome barriers in neuromuscular diseases


European Reference Network for rare Neuromuscular Diseases: EURO-NMD


How has RD-ACTION supported the conceptualisation and implementation of European Reference Networks?


International-DMD (IDMD): a PTC Therapeutics-supported diagnostic project to identify Dystrophin mutations by NGS technologies in patients throughout European countries


Introduction of ERN NMD Centre in Prague, Czech Republic


Mitochondrial diseases : Transition from childhood into adulthood, a model of care


Molecular diagnosis of spinal muscular atrophy with lower extremity predominance by NGS analysis


Motor Neuron Diseases at the UMC of Utrecht


Neurological and Neuropathological Alterations in Nerve and Muscle Tissue in Nesprinopathies


Patient Advisory Board : The Voice of Patients with Rare Neuromuscular Diseases


Rare Commons: an innovative social media platform 2.0 for collaborative clinical research on pediatric rare diseases


Rare neuromuscular disease patient registries – key to diagnosis and novel therapies


Standardized analysis and sharing of genome-phenome data for neuromuscular and rare disease research through the RD-Connect platform


The contribution of Erasmus MC University Medical Center to the field of neuromuscular disorders.


The development of a mobile app for patients with Pompe disease and its possible clinical applications


The MYO-SEQ project: application of exome sequencing technologies to 1000 patients affected by limb-girdle weakness of unknown origin


TREAT-NMD: Advancing Diagnosis, Treatment and Care in Neuromuscular Rare Diseases


Contact us

ERN EURO-NMD coordination
Institut de Myologie
GH Pitié-Salpêtrière
47-83, Bd de l’Hôpital
75013 Paris
France

info@ern-euro-nmd.eu

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The ERNs are co-funded by the
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“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).
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