News – Page 7 – 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”

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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

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Rare Barometer survey on rare disease patients’ experience of COVID-19

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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

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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

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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

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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

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European Reference Networks are 3 years old

Continue reading “European Reference Networks are 3 years old”

SCA Global Conference 2020 CANCELLED

Continue reading “SCA Global Conference 2020 CANCELLED”

New EHA video on ERN-RND

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ARCA Global Conference 2020 CANCELLED

Continue reading “ARCA Global Conference 2020 CANCELLED”

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”

EJP RD calls for funding – ERNs only

Continue reading “EJP RD calls for funding – ERNs only”

Successful ERN-RND Registry Application!

Continue reading “Successful ERN-RND Registry Application!”

New #RareDiseaseDay 2020 poster available!

Continue reading “New #RareDiseaseDay 2020 poster available!”

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 »

Find us on Bluesky

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ERN-RND @ern-rnd.bsky.social 4 hours

Join our free symposium on European Healthcare for RND patients!
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European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 6 hours

Stay ahead in #PaediatricNeurology by reading the #EPNS2025 Abstract Book to get quick insights into the latest research, treatments, and breakthroughs:
epns-congress.com/wp-content/u...
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ERN-RND @ern-rnd.bsky.social 6 hours

💻U#webinar#webinar on “Neurological and Non-Neurological Aspects in Palliative Care of FTD and PPA Patients”
📅16th September, 3:00 CEST
🗣️Renate Wahl, University Hospital Aachen, Germany
Sighttps://t1p.de/j8mlcde/j8mlc
Joint w/ the European Reference Network for Rare Neuromuscular Diseases and
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European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 4 days

Next FREE YEPNS Case Discussion!

Join us for an interactive journey through three compelling paediatric neurology cases—from clarity to enigma.

Register at: us02web.zoom.us/webinar/regi...
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European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 2 weeks

Want to be actively involved in the activities of the YEPNS?

Learn more - epns.info/young-epns-y...

Join for FREE! - epns.info/young-epns-y...
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ERDERA @erdera.bsky.social 2 weeks

📢 Exciting news — the #ERDERA Networking Support Scheme is n#ERDERA for applications! 👉 If you are working to advance research in #RareDiseases or rare cancers, this co#RareDiseasesnding opportunity you're looking for!
🔗 Find out more: https://loom.ly/CwIvcvM
🔁 Repost: Help us spread this info!
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ERN-RND @ern-rnd.bsky.social 2 weeks

Join our Scientific Symposium on "European Healthcare for RND Patients" on October 28 online! Free registration: us02web.zoom.us/webinar/regi...

Find the programme here: www.ern-rnd.eu/wp-content/u...

#HealthcareEU #Neurology #RareDisease #RareNeurologicalDisease #Symposium