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”
Dystonia, patient advocacy and the future by Monika Benson Continue reading “Dystonia, patient advocacy and the future by Monika Benson”
Recording of webinar on Huntington’s disease & COVID-19 available Continue reading “Recording of webinar on Huntington’s disease & COVID-19 available”
Guidelines on EU Emergency Assistance in Cross-border Cooperation in Healthcare Continue reading “Guidelines on EU Emergency Assistance in Cross-border Cooperation in Healthcare”
COVID-19: EURORDIS urges immediate action and proposes concrete solutions for rare disease patients Continue reading “COVID-19: EURORDIS urges immediate action and proposes concrete solutions for rare disease patients”
Webinar on 6 April: “Huntington’s Disease & COVID-19 pandemic – a difficult combination” Continue reading “Webinar on 6 April: “Huntington’s Disease & COVID-19 pandemic – a difficult combination””
European Commission launches COVID-19 Clinical Management Support System Continue reading “European Commission launches COVID-19 Clinical Management Support System”
EFNA launches survey on stigma & neurological conditions Continue reading “EFNA launches survey on stigma & neurological conditions”
European Reference Networks are 3 years old Continue reading “European Reference Networks are 3 years old”
ERN-RND Patient advocates meeting report, 30 January 2020 Continue reading “ERN-RND Patient advocates meeting report, 30 January 2020”
ERN-RND Survey: “Research Priorities” for patients Continue reading “ERN-RND Survey: “Research Priorities” for patients”