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ERN-RND | European Reference Network on Rare Neurological Diseases

ERN-RND | European Reference Network on Rare Neurological Diseases

for rare or low prevalence complex diseases

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    • Cross border healthcare
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    • … for rare neurological diseases
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  • Disease Knowledge
    • Cerebellar Ataxia & Hereditary Spastic Paraplegias (HSPs)
    • Chorea & Huntington’s disease
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Domain: General Aspects

Learning by example: HD-JUNIOR a national registry for patients with juvenile onset Huntington’s Disease

Learning by example: HD-JUNIOR a national registry for patients with juvenile onset Huntington’s Disease

1 Feb. 2022

Speaker: Hannah Bakels
Leiden University Medical Center, Netherlands

Recording

Slides

Pelizaeus-Merzbacher disease and related disorders (pediatric focus)

Pelizaeus-Merzbacher disease and related disorders (pediatric focus)

26 Oct. 2021

Speaker: Nicole Wolf
VU University Medical Center Amsterdam, Netherlands;
Emma Children’s Hospital, Amsterdam, Netherlands

Slides

X-Linked leukodystrophies – Update

X-Linked leukodystrophies – Update

7 Oct. 2021

Speaker: Caroline Sevin
Reference Center for Leukodystrophies, Hôpital de Bicêtre and ICM (institute of Brain and Spine), Paris, France

Recording

Slides

Adult leukodystrophies/early symptoms of late-onset Leukodystrophies

Adult leukodystrophies/early symptoms of late-onset Leukodystrophies

5 Oct. 2021

Speaker: Fanny Mochel
APHP – Pitié-Salpêtrière Hospital, Paris, France

Recording

Slides

Treatable dystonia &dystonia in inborn errors of metabolism

Treatable dystonia &dystonia in inborn errors of metabolism

28 Sep. 2021

Speaker: Tom J. de Koning
University Medical Centre Groningen, Netherlands

Recording

Slides

Genetic forms of parkinson

Genetic forms of parkinson

14 Sep. 2021

Speaker: Thomas Gasser
University Hospital Tübingen, Germany

Recording

Slides

Metachromatic Leukodystrophy – update

Metachromatic Leukodystrophy – update

15 Jun. 2021

Speaker: Samuel Gröschel & Ingeborg Krägeloh
University Hospital Tübingen, Germany

Slides

Better Conversations – Communication Partner Training for language led dementias

Better Conversations – Communication Partner Training for language led dementias

18 May 2021

Speaker: Kathryn Peall
Neurosciences and Mental Health Research Institute, Cardiff, United Kingdom

Recording

Approach to the patient with non-HD chorea

Approach to the patient with non-HD chorea

20 Apr. 2021

Speaker: Ruth Walker
James J. Peters Veterans Affairs Medical Center, New York City, USA
Department of Neurology, Mount Sinai School of Medicine, New York City, USA

Slides

MR Biomarkers in Spinocerebellar Ataxias

MR Biomarkers in Spinocerebellar Ataxias

13 Apr. 2021

Speaker: Gülin Öz
University of Minnesota, USA

Recording

Challenges in Frontotemporal Dementia: clinical, genetic and pathological heterogeneity

Challenges in Frontotemporal Dementia: clinical, genetic and pathological heterogeneity

23 Mar. 2021

Speaker: Harro Seelaar
Erasmus University Medical Center, Rotterdam, Netherlands

Recording

Myoclonus dystonia

Myoclonus dystonia

9 Mar. 2021

Speaker: Belén Pérez Dueñas
Vall d’Hebron University Hospital, Barcelona, Spain

Recording

Slides

Improving care for rare disease patients in Europe – Rare Disease Day 2021

Improving care for rare disease patients in Europe – Rare Disease Day 2021

23 Feb. 2021

Speaker: Holm Graessner, Donna Walsh, Sophie Bernichtein, Tobias Mentzel, Judit Molnar

Recording

Slides

Rare Disease Natural History Studies: Experience from the GNAO1 Natural History study in a pre and post pandemic world

Rare Disease Natural History Studies: Experience from the GNAO1 Natural History study in a pre and post pandemic world

9 Feb. 2021

Speaker: Amy Robichaux Viehoever
Washington University, St. Louis, USA

Recording

Slides

Genetic dystonia and treatment

Genetic dystonia and treatment

2 Feb. 2021

Speaker: Sylvia Boesch
Medical University Innsbruck, Austria

Slides

Progressive Supranuclear Palsy – Update on Diagnostics, Biomarkers, Therapies

Progressive Supranuclear Palsy – Update on Diagnostics, Biomarkers, Therapies

26 Jan. 2021

Speaker: Günter Höglinger
Hannover Medical School, Germany

Recording

Slides

Clinical practice recommendations for physical therapy for Huntington’s disease

Clinical practice recommendations for physical therapy for Huntington’s disease

20 Oct. 2020

Speaker: Bernhard Landwehrmeyer
University Hospital Ulm, Germany

Recording

Slides

Diagnostic algorithm for childhood onset chorea

Diagnostic algorithm for childhood onset chorea

13 Oct. 2020

Speaker: Juan Dario Ortigoza Escobar
Sant Joan de Déu Hospital, Barcelona, Spain

Recording

Slides

Hereditary Spastic Paraplegia – Clinical Disease Course

Hereditary Spastic Paraplegia – Clinical Disease Course

1 Oct. 2020

Speaker: Rebecca Schüle
University Hospital Tübingen, Germany

Recording

Slides

Semantic variant of primary progressive aphasia

Semantic variant of primary progressive aphasia

8 Sep. 2020

Speaker: Robert Rusina
Thomayer Hospital, Prague, Czech Republic

Recording

Slides

Primary progressive aphasia subtyping in clinical practice

Primary progressive aphasia subtyping in clinical practice

26 May. 2020

Speaker: Rik Vandeberghe
University Hospital Leuven, Belgium

Recording

Slides

Paroxysmal dyskinesias: update on clinical and genetic aspects

Paroxysmal dyskinesias: update on clinical and genetic aspects

12 May. 2020

Speaker: Giovanna Zorzi
IRCCS – Foundation of the Carlo Besta Neurological Institute, Milan, Italy

Recording

Slides

Hypomyelination

Hypomyelination

21 Apr. 2020

Speaker: Nicole Wolf
VU University Medical Center Amsterdam, Netherlands

Recording

Slides

Recognizing atypical parkinsonism

Recognizing atypical parkinsonism

14 Apr. 2020

Speaker: Wassilios Meissner
Institute of Neurodegenerative Disorders, CHU – University Hospital Bordeaux, France

Recording

Slides

X-linked Adrenoleukodystrophy

X-linked Adrenoleukodystrophy

17 Mar. 2020

Speaker: Marc Engelen
VU University Medical Center Amsterdam, Netherlands

Recording

Slides

Clinical evaluation of dystonia

Clinical evaluation of dystonia

4 Feb. 2020

Speaker: Kailash Bhatia
UCL Queen Square Institute of Neurology, London, United Kingdom

Recording

Introduction into Leukodystrophies

Introduction into Leukodystrophies

28 Jan. 2020

Speaker: Nicole Wolf
VU University Medical Center Amsterdam, Netherlands

Recording

Slides

Neuroacanthocytosis syndromes

Neuroacanthocytosis syndromes

17 Dec. 2019

Speaker: Alfons Macaya
Vall d’Hebron University Hospital, Barcelona, Spain

Recording

Slides

Non-progressive congenital ataxia

Non-progressive congenital ataxia

3 Dec. 2019

Speaker: Adrian Danek
Ludwig Maximilian University Hospital, Munich, Germany

Recording

Slides

Clinical features of ataxia

Clinical features of ataxia

5 Nov. 2019

Speaker: Bart van de Warrenburg
Radboud University Medical Center, Nijmegen, Netherlands

Recording

Slides

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Webinar Schedule

Latest News

  • 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 »
  • John Gerbild elected as Board Director for EURORDIS

    May 19, 2025
    We are happy to announce that our patient advocate John Gerbild (representative for: Ataxia/HSP) is now a newly elected Board …read more »

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ERN-RND

@ern-rnd.bsky.social

145 Followers 84 Following 121 Posts

European Reference Network for Rare Neurological Diseases (ERN-RND) to improve diagnosis, care & treatment of RND patients.
Free webinars: https://www.ern-rnd.eu/education-training/webinars/

  • Get to this post

    ERN-RND @ern-rnd.bsky.social 17 hours

    #WorldBrainDay is coming up on July 22! We asked our network: "If you could change one thing in the health care system for Rare Neurological Diseases what would that be and why?"

    This is what our patient representative Mary Kearney (Friedreich's #Ataxia) said.

    #WorldBrainDay2025 #WorldBrainDay25
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 7 days

    Bye bye #EAN2025: meeting members and partners, introducing pur new postgraduate curriculum (hosted on eanCampus), talking about future projects, planning new cooperations - we had a great time in Helsinki and are looking forward to the #EAN2026 In Geneva! #EAN2026
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 1 week

    EAN2025 - #PublicBrainHealthDay #BrainHealthMission

    I"f you could change ONE THING in the health care system for rare neurological diseases - what do you think is needed most and why?"

    This is what our coordinator Holm Graessner would change first:

    #ToBeContinued - more to come soon! #ToBeContinued
  • Get to this post

    Parkinson's Europe @parkinsonseurope.bsky.social 1 week

    We're loving #EAN2025! Come to our booth in the Neurohood area - N18 - and say hello, and pick up some Parkinson's Passports (in six languages!). ❤️ 🌷

    #Parkinsons #Parkinson ‪@ean.org‬
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 1 week

    #EAN2025 Come and learn more about our new online medical education programme - we are in the Neurohood, N21
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 1 week

    #Today: Learn more about ERNs and current practices on genetic therapies in Europe at 17.25 CEST in the Scientific Theatre - the talk will be held by Kleopas Kleopa and will include practices from ERN-RND and EURO-NMD European Reference Network for Rare Neuromuscular Diseases
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 1 week

    #EAN2025: Meet the ERNs at the the EAN Congress. Come and find us and EURO-NMD European Reference Network for Rare Neuromuscular Diseases at the booth N21 in the Neurohood!

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ERN-RND European Reference Network for Rare Neurological Diseases

Our mission

ERN-RND aims to support rare neurological patients in Europe in getting a timely and appropriate diagnosis, treatment and care.

ERNs

ERN-RND is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. For more information about the ERNs and the EU Health strategy, please visit https://ec.europa.eu/health/ern_en

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