News 2020 – Page 3 – ERN-RND | European Reference Network on Rare Neurological Diseases

Research article: “Disease Progression and Prognostic Factors in Multiple System Atrophy: A Prospective Cohort Study”

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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

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ERN-RND May 2020 Newsletter

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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”

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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”

ECRD 2020 moves online

Continue reading “ECRD 2020 moves online”

EFNA launches survey on stigma & neurological conditions

Continue reading “EFNA launches survey on stigma & neurological conditions”

It’s #BrainAwarenessWeek 2020

Continue reading “It’s #BrainAwarenessWeek 2020”

European Reference Networks are 3 years old

Continue reading “European Reference Networks are 3 years old”

ePAG visit at Children’s Hospital Sant Joan de Déu, Barcelona
July 7, 2025
Having a rare disease means spending a lot of time around doctors and hospitals. Places, that even adults will not …read more »
Meet us at EAN2025
June 11, 2025
Are you at this year’s EAN Congress in Helsinki? Then come and visit us at our booth (N21) in the …read more »
Review on DBS for Dystonia
June 11, 2025
Despite considerable achievements in genetics in dystonias, their response to possible treatment such as Deep Brain Stimulation (DBS) remains to …read more »

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ERN-RND @ern-rnd.bsky.social 2 days

Movement Disorders affect also children and therefore paediatric scales are needed - but which one to use when, what treatment in which frequency? A standardization is needed. Learn more in our interview with ERN-RND clinician Juan Dario Ortigoza Escobar www.youtube.com/watch?v=k46u...
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European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 4 days

We are delighted to announce that the application period for EPNS Visiting Teacher 2026 is now open!

For more information visit: epns.info/epns-visitin...
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ERN-RND @ern-rnd.bsky.social 1 week

#WorldBrainDay - There are many gaps in the European #Healthcare systems for rare neurological diseases - but if you could change only #OneThing to make it better, what would you choose? Find out what our clinicians, patient advocates and patient organizations would do!
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ERN-RND @ern-rnd.bsky.social 2 weeks

One more day till #WorldBrainDay: "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?"

This is what ERN-RND clinician Rebecca Schuele would change: https://f.mtr.cool/mqrhizkhjs

#WorldBrainDay2025 <https://f.mtr.cool/mqrhizkhjstag/BrainHealth">#BrainHealth
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ERN-RND @ern-rnd.bsky.social 2 weeks

22 July is #WorldBrainDay: "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?"

This is what ERN-RND clinician Vassilis Constantinides would change: https://f.mtr.cool/kkmcrksprq

#WorldBrainDay2025 https://f.mtr.cool/kkmcrksprqshtag/BrainHealth">#BrainHealth
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ERN-RND @ern-rnd.bsky.social 2 weeks

5 more days till #WorldBrainDay: "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?"
This is what ERN-RND clinician Jana Dominguez Carral from wo#WorldBrainDay:
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ERN-RND @ern-rnd.bsky.social 2 weeks

#WorldBrainDay is coming up on July 22! "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?"

This is what ERN-RND clinician David Gomez would change first: www.youtube.com/watch?v=ukLl...
#WorldBrainDay2025