ERN-RND – Page 11 – ERN-RND | European Reference Network on Rare Neurological Diseases

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””

27-29 April 2020 | ‘Training on strategies to foster solutions of undiagnosed rare disease cases’

Continue reading “27-29 April 2020 | ‘Training on strategies to foster solutions of undiagnosed rare disease cases’”

29 April | Share4Rare webinar: “State of the Art of Rare Disease Activities in Europe”

Continue reading “29 April | Share4Rare webinar: “State of the Art of Rare Disease Activities in Europe””

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””

23 April 2020 | EURO-NMD webinar “exercise & NMD”

Continue reading “23 April 2020 | EURO-NMD webinar “exercise & NMD””

21 April 2020 | ERN-RND webinar “hypomyelination”

Continue reading “21 April 2020 | ERN-RND webinar “hypomyelination””

14 April 2020 | ERN-RND webinar “recognizing atypical parkinsonism”

Continue reading “14 April 2020 | ERN-RND webinar “recognizing atypical parkinsonism””

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”

6-7 April 2020 | SCA Global Conference CANCELLED

Continue reading “6-7 April 2020 | SCA Global Conference CANCELLED”

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

Continue reading “Guidelines on EU Emergency Assistance in Cross-border Cooperation in Healthcare”

6 April 2020 | EHA & ERN-RND webinar: “Huntington’s disease and the Covid-19 pandemic – a difficult combination”

Continue reading “6 April 2020 | EHA & ERN-RND webinar: “Huntington’s disease and the Covid-19 pandemic – a difficult combination””

Author: ERN-RND

EFNA position paper on patient involvement in research

NEW! ERN-RND introduction video

23-26 May 2020 | 6th (Virtual) Congress of the European Academy of Neurology

26 May 2020 | ERN-RND webinar “Primary progressive aphasia subtyping in clinical practice”

EJP RD Networking Support Scheme (NSS) open

ERN-RND at ECRD 2020 – summary

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

14-15 May 2020 | 10th European Conference on Rare Diseases & Orphan Products (ECRD2020)

Livre: “Huntington…et alors? Comprendre la maladie et vivre avec”

12 May 2020 | ERN-RND webinar “paroxysmal dyskinesias: update on clinical and genetic aspects”

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”

27-29 April 2020 | ‘Training on strategies to foster solutions of undiagnosed rare disease cases’

29 April | Share4Rare webinar: “State of the Art of Rare Disease Activities in Europe”

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”

23 April 2020 | EURO-NMD webinar “exercise & NMD”

21 April 2020 | ERN-RND webinar “hypomyelination”

14 April 2020 | ERN-RND webinar “recognizing atypical parkinsonism”

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

6-7 April 2020 | SCA Global Conference CANCELLED

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

6 April 2020 | EHA & ERN-RND webinar: “Huntington’s disease and the Covid-19 pandemic – a difficult combination”