ERN-RND – Page 5 – ERN-RND | European Reference Network on Rare Neurological Diseases

14 September 2021 | ERN-RND webinar “Genetic forms of Parkinson’s disease”

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9-11 September 2021 | EHDN plenary meeting

Continue reading “9-11 September 2021 | EHDN plenary meeting”

New EJP RD training: “Pluripotent stem cells for rare disease research: banking, data, application”

Continue reading “New EJP RD training: “Pluripotent stem cells for rare disease research: banking, data, application””

Launch of the ERN Research Training Workshops funding opportunity

Continue reading “Launch of the ERN Research Training Workshops funding opportunity”

4 September 2021 | Dystonia Europe Annual Conference – Dystonia Day

Continue reading “4 September 2021 | Dystonia Europe Annual Conference – Dystonia Day”

Review article: “Evolving concepts in progressive supranuclear palsy and other 4-repeat tauopathies”

Continue reading “Review article: “Evolving concepts in progressive supranuclear palsy and other 4-repeat tauopathies””

Research article: “Biallelic PI4KA variants cause neurological, intestinal and immunological disease”

Continue reading “Research article: “Biallelic PI4KA variants cause neurological, intestinal and immunological disease””

Research article: “Neurofilament light chain and glial fibrillary acidic protein levels in metachromatic leukodystrophy”

Continue reading “Research article: “Neurofilament light chain and glial fibrillary acidic protein levels in metachromatic leukodystrophy””

New interview available – meet Nicole Wolf from Emma Children’s Hospital/Amsterdam University Medical Centers, the Netherlands

Continue reading “New interview available – meet Nicole Wolf from Emma Children’s Hospital/Amsterdam University Medical Centers, the Netherlands”

EURORDIS Black Pearl Awards – nominations open

Continue reading “EURORDIS Black Pearl Awards – nominations open”

6 July 2021 | ERN-RND webinar “Speech as a biomarker in ataxia: What can it tell us and how should we use it?”

Continue reading “6 July 2021 | ERN-RND webinar “Speech as a biomarker in ataxia: What can it tell us and how should we use it?””

30 June – 2 July 2021 | ERN-RND Annual Meeting

Continue reading “30 June – 2 July 2021 | ERN-RND Annual Meeting”

Solve-RD experts team up to share and analyse data from unsolved rare disease patients

Continue reading “Solve-RD experts team up to share and analyse data from unsolved rare disease patients”

Share your reason for Europe to take action on rare diseases!

Continue reading “Share your reason for Europe to take action on rare diseases!”

19-22 June 2021 | EAN Congress 2021

Continue reading “19-22 June 2021 | EAN Congress 2021”

“Quality assurance, variant interpretation and data management in the NGS diagnostics era” training

Continue reading ““Quality assurance, variant interpretation and data management in the NGS diagnostics era” training”

International Summer School on Rare Disease Registries and FAIRification of Data

Continue reading “International Summer School on Rare Disease Registries and FAIRification of Data”

A first trial of Guanabenz in Vanishing White Matter

Continue reading “A first trial of Guanabenz in Vanishing White Matter”

15 June 2021 | ERN-RND webinar “Update Metachromatic Leukodystrophy”

Continue reading “15 June 2021 | ERN-RND webinar “Update Metachromatic Leukodystrophy””

8 June 2021 | ERN-RND webinar “MRI pattern recognition in leukodystrophies”

Continue reading “8 June 2021 | ERN-RND webinar “MRI pattern recognition in leukodystrophies””

8 June 2021 | Value of Treatment 2 Synthesis Meeting

Continue reading “8 June 2021 | Value of Treatment 2 Synthesis Meeting”

The Value of Treatment for Brain Disorders: Case Studies on Rare Diseases & Mental Disorders present findings at  Synthesis Meeting

Continue reading “The Value of Treatment for Brain Disorders: Case Studies on Rare Diseases & Mental Disorders present findings at  Synthesis Meeting”

ERN-RND webinar on “MRI pattern recognition in leukodystrophies” – MRI upload by participants

Continue reading “ERN-RND webinar on “MRI pattern recognition in leukodystrophies” – MRI upload by participants”

27-28 May 2021 | ERICA kick-off meeting & first General Assembly

Continue reading “27-28 May 2021 | ERICA kick-off meeting & first General Assembly”

CPMS tutorial video for ERN-RND clinicians now available

Continue reading “CPMS tutorial video for ERN-RND clinicians now available”

Research article: “Regional Brain and Spinal Cord Volume Loss in Spinocerebellar Ataxia Type 3”

Continue reading “Research article: “Regional Brain and Spinal Cord Volume Loss in Spinocerebellar Ataxia Type 3””

OneNeurology Global Advocacy Workshop 2021

Continue reading “OneNeurology Global Advocacy Workshop 2021”

EJP RD Workshop: Clinical Research with databases: The Basics & Beyond Workshop in clinical epidemiological research for ERNs

Continue reading “EJP RD Workshop: Clinical Research with databases: The Basics & Beyond Workshop in clinical epidemiological research for ERNs”

18 May 2021 | ERN-RND webinar “Benign hereditary choreas” (paediatric focus)

Continue reading “18 May 2021 | ERN-RND webinar “Benign hereditary choreas” (paediatric focus)”

7 May 2021 | ERN-RND webinar “Presenting the new CPMS functionalities and the principle of e-consultations”

Continue reading “7 May 2021 | ERN-RND webinar “Presenting the new CPMS functionalities and the principle of e-consultations””

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 4 hours

💻 U#webinar#webinar on “Social and Lifestyle Issues Related to FTD and PPA”
📅 30th September, 3:00 CEST
🗣️ Alexa Häger, University Hospital Aachen, Germany
Sign https://t1p.de/z2acade/z2aca

Joint with the European Reference Network for Rare Neuromuscular Diseases and
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ERN-RND @ern-rnd.bsky.social 1 week

💻U#webinar#webinar on “Patient Journeys: Reliable Comprehensive Documents which Summarise a Rare Disease”
📅23rd September, 3 CEST
🗣️P. Mihaylova & M. Kearney, Tallaght University Hospital
Sighttps://t1p.de/3r6k3de/3r6k3
Joint w/ the European Reference Network for Rare Neuromuscular Diseases and
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ERN-RND @ern-rnd.bsky.social 1 week

Participate in the #EU4Health #Survey on current and future health priorities till September 30! The #Survey is inviting interested stakeholders to share their views on future priorities, orientations and needs for the future of the EU4Health programme.
hadea.ec.europa.eu/news/targete...
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ERN-RND @ern-rnd.bsky.social 2 weeks

What's the status on European #healthcare for rare neurological diseases in #ERNs?

Join our Symposium on October 28 online (free of charge): tinyurl.com/yc3yts72

Find the programme here: www.ern-rnd.eu/wp-content/u...
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ERN-RND @ern-rnd.bsky.social 2 weeks

Join our free symposium on European Healthcare for RND patients!
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European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 2 weeks

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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European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 3 weeks

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...