#BrainLifeGoals campaign on World Brain Day 2020 Continue reading “#BrainLifeGoals campaign on World Brain Day 2020”
NEW ePAG patient advocate for Leukodystrophies from Germany Continue reading “NEW ePAG patient advocate for Leukodystrophies from Germany”
Research article: “COVID‑19 reveals influence of physical activity on symptom severity in hereditary spastic paraplegia” Continue reading “Research article: “COVID‑19 reveals influence of physical activity on symptom severity in hereditary spastic paraplegia””
SCA & ARCA Global online Conference – registration is open Continue reading “SCA & ARCA Global online Conference – registration is open”
EJP RD course “International Summer School on Rare Disease Registries and FAIRification of Data” Continue reading “EJP RD course “International Summer School on Rare Disease Registries and FAIRification of Data””
Research article: “Features of Speech and Swallowing Dysfunction in Pre-Ataxic Spinocerebellar Ataxia Type 2” Continue reading “Research article: “Features of Speech and Swallowing Dysfunction in Pre-Ataxic Spinocerebellar Ataxia Type 2””
Dystonia Europe & European Huntington Association receive #BrainLifeGoals project grant Continue reading “Dystonia Europe & European Huntington Association receive #BrainLifeGoals project grant”
ERN-RND June Newsletter 2020 – CORRECTION Continue reading “ERN-RND June Newsletter 2020 – CORRECTION”
EJP RD fellowship awarded to ERN-RND member Continue reading “EJP RD fellowship awarded to ERN-RND member”
Research article: “Disease Progression and Prognostic Factors in Multiple System Atrophy: A Prospective Cohort Study” Continue reading “Research article: “Disease Progression and Prognostic Factors in Multiple System Atrophy: A Prospective Cohort Study””
Research article: “Awareness of rare and genetic neurological diseases among italian neurologist. A national survey” Continue reading “Research article: “Awareness of rare and genetic neurological diseases among italian neurologist. A national survey””
EFNA position paper on patient involvement in research Continue reading “EFNA position paper on patient involvement in research”
EJP RD Networking Support Scheme (NSS) open Continue reading “EJP RD Networking Support Scheme (NSS) open”
ERN-RND at EAN congress on 22-26 May 2020 Continue reading “ERN-RND at EAN congress on 22-26 May 2020”
Livre: “Huntington…et alors? Comprendre la maladie et vivre avec” Continue reading “Livre: “Huntington…et alors? Comprendre la maladie et vivre avec””
NEW! research article: “Management of rare movement disorders in Europe: outcome of surveys of ERN-RND” Continue reading “NEW! research article: “Management of rare movement disorders in Europe: outcome of surveys of ERN-RND””
May is Huntington’s Disease Awareness Month Continue reading “May is Huntington’s Disease Awareness Month”
Research article: “Cerebrospinal Fluid YKL-40 and Chitotriosidase Levels in Frontotemporal Dementia Vary by Clinical, Genetic and Pathological Subtype” Continue reading “Research article: “Cerebrospinal Fluid YKL-40 and Chitotriosidase Levels in Frontotemporal Dementia Vary by Clinical, Genetic and Pathological Subtype””
Research article: “Teaching Video NeuroImages: Palatal tremor associated with SPG7 variants” Continue reading “Research article: “Teaching Video NeuroImages: Palatal tremor associated with SPG7 variants””
Rare Barometer survey on rare disease patients’ experience of COVID-19 Continue reading “Rare Barometer survey on rare disease patients’ experience of COVID-19”
Research article: “Longitudinal dynamics of mutant huntingtin and neurofilament light in Huntington’s disease: the prospective HD-CSF study” Continue reading “Research article: “Longitudinal dynamics of mutant huntingtin and neurofilament light in Huntington’s disease: the prospective HD-CSF study””
Research article: “Driving Performance in Patients With Idiopathic Cervical Dystonia; A Driving Simulator Pilot Study” Continue reading “Research article: “Driving Performance in Patients With Idiopathic Cervical Dystonia; A Driving Simulator Pilot Study””
EAN Movement Disorders Scientific Panel recommendations for COVID-19 pandemic Continue reading “EAN Movement Disorders Scientific Panel recommendations for COVID-19 pandemic”