News – Page 6 – ERN-RND | European Reference Network on Rare Neurological Diseases

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”

NEW! ERN-RND introduction video

Continue reading “NEW! ERN-RND introduction video”

EJP RD Networking Support Scheme (NSS) open

Continue reading “EJP RD Networking Support Scheme (NSS) open”

ERN-RND at ECRD 2020 – summary

Continue reading “ERN-RND at ECRD 2020 – summary”

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”

ERN-RND May 2020 Newsletter

Continue reading “ERN-RND May 2020 Newsletter”

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””

ERN Newsletter – April 2020

Continue reading “ERN Newsletter – April 2020”

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”

Solve-RD brokerage call open

Continue reading “Solve-RD brokerage call open”

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”

EAN Congress 2020 moves online

Continue reading “EAN Congress 2020 moves online”

Category: News

EPNS 2021, abstract submission open

NEW Euro-HSP Facebook page

ERN-RND June Newsletter 2020 – CORRECTION

EJP RD fellowship awarded to ERN-RND member

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”

EFNA position paper on patient involvement in research

NEW! ERN-RND introduction video

EJP RD Networking Support Scheme (NSS) open

ERN-RND at ECRD 2020 – summary

ERN-RND at EAN congress on 22-26 May 2020

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”

May is Huntington’s Disease Awareness Month

ERN-RND May 2020 Newsletter

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”

ERN Newsletter – April 2020

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”

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

Dystonia, patient advocacy and the future by Monika Benson

Recording of webinar on Huntington’s disease & COVID-19 available

Guidelines on EU Emergency Assistance in Cross-border Cooperation in Healthcare

Solve-RD brokerage call open

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”

European Commission launches COVID-19 Clinical Management Support System

EAN Congress 2020 moves online