News 2020 – Page 2 – ERN-RND | European Reference Network on Rare Neurological Diseases

Research article: “Huntington’s disease alters human neurodevelopment”

Continue reading “Research article: “Huntington’s disease alters human neurodevelopment””

Research article: “Cardiac phenotype in ATP1A3-related syndromes: A multicentre cohort study”

Continue reading “Research article: “Cardiac phenotype in ATP1A3-related syndromes: A multicentre cohort study””

Research article: “Dystonia genes functionally converge in specific neurons and share neurobiology with psychiatric disorders”

Continue reading “Research article: “Dystonia genes functionally converge in specific neurons and share neurobiology with psychiatric disorders””

European Spinocerebellar Ataxia Type 3/Machado-Joseph Disease Initiative (ESMI) –lay summary of the results of this 4-year Consortium study

Continue reading “European Spinocerebellar Ataxia Type 3/Machado-Joseph Disease Initiative (ESMI) –lay summary of the results of this 4-year Consortium study”

ERN-RND September 2020 Newsletter

Continue reading “ERN-RND September 2020 Newsletter”

Research article: “Conversion of individuals at risk for spinocerebellar ataxia types 1, 2, 3, and 6 to manifest ataxia (RISCA): a longitudinal cohort study”

Continue reading “Research article: “Conversion of individuals at risk for spinocerebellar ataxia types 1, 2, 3, and 6 to manifest ataxia (RISCA): a longitudinal cohort study””

NEW ePAG patient advocate for Huntington’s disease from Bulgaria

Continue reading “NEW ePAG patient advocate for Huntington’s disease from Bulgaria”

Solve-RD Rare Disease Models & Mechanisms Network (RDMM-Europe)

Continue reading “Solve-RD Rare Disease Models & Mechanisms Network (RDMM-Europe)”

Jump for Dystonia competition in September

Continue reading “Jump for Dystonia competition in September”

David Marsden Award 2021 – open call for submission

Continue reading “David Marsden Award 2021 – open call for submission”

New FTD website by FTD talk team

Continue reading “New FTD website by FTD talk team”

SCA & ARCA Global Online Conference 2020 – Abstract submission

Continue reading “SCA & ARCA Global Online Conference 2020 – Abstract submission”

Webinars on Leukodystrophies by ELA Deutschland

Continue reading “Webinars on Leukodystrophies by ELA Deutschland”

Results of EFNA’s survey on stigma & neurological disorder

Continue reading “Results of EFNA’s survey on stigma & neurological disorder”

EURORDIS Winter School 2021

Continue reading “EURORDIS Winter School 2021”

Share4Rare – new international patient registry for COVID-19

Continue reading “Share4Rare – new international patient registry for COVID-19”

2020 CEF Telecom call – eHealth open

Continue reading “2020 CEF Telecom call – eHealth open”

EAN sets up the Ean NEuro-covid ReGistrY (ENERGY)

Continue reading “EAN sets up the Ean NEuro-covid ReGistrY (ENERGY)”

#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””

ERN-RND July 2020 Newsletter

Continue reading “ERN-RND July 2020 Newsletter”

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”

EPNS 2021, abstract submission open

Continue reading “EPNS 2021, abstract submission open”

NEW Euro-HSP Facebook page

Continue reading “NEW Euro-HSP Facebook page”

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”

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 1 day

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 3 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 1 week

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