News – Page 4 – ERN-RND | European Reference Network on Rare Neurological Diseases

Survey: educational needs in rare neurological diseases in Europe

Continue reading “Survey: educational needs in rare neurological diseases in Europe”

FUNDING – EJP RD / ERN Research Mobility Fellowship call open

Continue reading “FUNDING – EJP RD / ERN Research Mobility Fellowship call open”

EJP RD – ERN Research Mobility Fellowship funding opportunity

Continue reading “EJP RD – ERN Research Mobility Fellowship funding opportunity”

ERICA project kick-off

Continue reading “ERICA project kick-off”

EJP RD Rare Disease Day Video

Continue reading “EJP RD Rare Disease Day Video”

Health Awareness Rare Disease Day 2021 campaign

Continue reading “Health Awareness Rare Disease Day 2021 campaign”

New leaflet for patients on Muscle tightness & stiffness – “spasticity” in ataxia

Continue reading “New leaflet for patients on Muscle tightness & stiffness – “spasticity” in ataxia”

ERN-RND recorded webinar: “Improving care for rare disease patients in Europe – Rare Disease Day 2021”

Continue reading “ERN-RND recorded webinar: “Improving care for rare disease patients in Europe – Rare Disease Day 2021””

“Der Weg zur europaweiten Zusammenarbeit” von Holm Graessner

Continue reading ““Der Weg zur europaweiten Zusammenarbeit” von Holm Graessner”

ERN-RND recorded webinar: “Rare Disease Natural History Studies: Experience from the GNAO1 Natural History study in a pre and postpandemic world”

Continue reading “ERN-RND recorded webinar: “Rare Disease Natural History Studies: Experience from the GNAO1 Natural History study in a pre and postpandemic world””

ERN-RND recorded webinar: “Progressive Supranuclear Palsy – Update on Diagnostics, Biomarkers and Therapies”

Continue reading “ERN-RND recorded webinar: “Progressive Supranuclear Palsy – Update on Diagnostics, Biomarkers and Therapies””

Research article: “Novel instructionless eye tracking tasks identify emotion recognition deficits in frontotemporal dementia”

Continue reading “Research article: “Novel instructionless eye tracking tasks identify emotion recognition deficits in frontotemporal dementia” “

Case report: “Video Case Report: Action Myoclonus After CAR-T Cell Therapy”

Continue reading “Case report: “Video Case Report: Action Myoclonus After CAR-T Cell Therapy””

Rare Disease Day 2021 video

Continue reading “Rare Disease Day 2021 video”

New ERN-RND project manager

Continue reading “New ERN-RND project manager”

New ERN-RND CPMS helpdesk

Continue reading “New ERN-RND CPMS helpdesk”

Brief report: “Development of SARAhome, a New Video‐Based Tool for the Assessment of Ataxia at Home”

Continue reading “Brief report: “Development of SARAhome, a New Video‐Based Tool for the Assessment of Ataxia at Home””

ERN-RND February 2021 Newsletter

Continue reading “ERN-RND February 2021 Newsletter”

EJP RD research training workshop – call open

Continue reading “EJP RD research training workshop – call open”

EURORDIS Leadership School – applications open

Continue reading “EURORDIS Leadership School – applications open”

Review article: “The European Reference Network for Rare Neurological Diseases”

Continue reading “Review article: “The European Reference Network for Rare Neurological Diseases””

Research article: “Lower urinary tract and bowel dysfunction in spinocerebellar ataxias”

Continue reading “Research article: “Lower urinary tract and bowel dysfunction in spinocerebellar ataxias””

Virtual Meeting on How to Improve Access to Care for Huntington Families – recording available

Continue reading “Virtual Meeting on How to Improve Access to Care for Huntington Families – recording available”

Review article: “Hypomyelinating leukodystrophies — unravelling myelin biology”

Continue reading “Review article: “Hypomyelinating leukodystrophies — unravelling myelin biology””

Research article: “Endocrine and Growth Abnormalities in 4H Leukodystrophy Caused by Variants in POLR3A, POLR3B, and POLR1C”

Continue reading “Research article: “Endocrine and Growth Abnormalities in 4H Leukodystrophy Caused by Variants in POLR3A, POLR3B, and POLR1C””

Registration and abstract submission for the EAN Congress 2021 are open

Continue reading “Registration and abstract submission for the EAN Congress 2021 are open”

Research article: “Apathy in presymptomatic genetic frontotemporal dementia predicts cognitive decline and is driven by structural brain changes”

Continue reading “Research article: “Apathy in presymptomatic genetic frontotemporal dementia predicts cognitive decline and is driven by structural brain changes””

No deal Brexit could have detrimental impact for four million people in UK living with a rare disease

Continue reading “No deal Brexit could have detrimental impact for four million people in UK living with a rare disease”

ERN-RND December 2020 Newsletter

Continue reading “ERN-RND December 2020 Newsletter”

EURORDIS Black Pearl Awards 2021 – Submit your photo

Continue reading “EURORDIS Black Pearl Awards 2021 – Submit your photo”

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

Get to this post

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

Join our free symposium on European Healthcare for RND patients!
Get to this post

European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 4 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...
Get to this post

ERN-RND @ern-rnd.bsky.social 4 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
Get to this post

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...
Get to this post

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...
Get to this post

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!
Get to this post

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