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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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Domain: Treatment/Therapy

Deep brain stimulation in children with acquired dystonia

Deep brain stimulation in children with acquired dystonia

7 Dec. 2021

Speaker: Anne Koy
University Hospital Cologne, Germany

Recording

Oligonucleotide therapies: a new class of drugs that allow precise genetic targeting

Oligonucleotide therapies: a new class of drugs that allow precise genetic targeting

19 Oct. 2021

Speaker: Annemieke Aartsma-Rus
Leiden University Medical Center, Netherlands

Recording

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

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

Genetic dystonia and treatment

Genetic dystonia and treatment

2 Feb. 2021

Speaker: Sylvia Boesch
Medical University Innsbruck, Austria

Slides

Rehabilitation in ataxia: current evidence and practice

Rehabilitation in ataxia: current evidence and practice

10 Nov. 2020

Speaker: Ludger Schöls
University Hospital Tübingen, Germany

Recording

Slides

Non-invasive stimulation for ataxias

Non-invasive stimulation for ataxias

3 Nov. 2020

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

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

Treatment of spasticity in HSP and leukodystrophies

Treatment of spasticity in HSP and leukodystrophies

6 Oct. 2020

Speaker: Annemieke Buizer & Laura Bonouvrié
VU University Medical Center Amsterdam, Netherlands

Recording

How can we develop and implement evidence based rehabilitation in rare disorders?

How can we develop and implement evidence based rehabilitation in rare disorders?

29 Sep. 2020

Speaker: Hortensia Gimeno
Guy’s and St Thomas’ NHS Foundation Trust, London, United Kingdom

Recording

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

Gait rehabilitation in people with hereditary spastic paraplegia & Respiratory physiotherapy in parkinson’s plus syndromes

Gait rehabilitation in people with hereditary spastic paraplegia & Respiratory physiotherapy in parkinson’s plus syndromes

14. July. 2020

Speaker: Jorik Nonnekes & Martin Srp
Radboud University Medical Centre, Nijmegen, Netherlands;
Charles University and General University Hospital, Prague, Czech Republic

Recording

Slides

RCT on intrathecal baclofen for dystonia

RCT on intrathecal baclofen for dystonia

30 June 2020

Speaker: Laura Bonouvrié
Radboud University Medical Center, Nijmegen, Netherlands

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

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

Ultrasound diagnostics for cervical dystonia

Ultrasound diagnostics for cervical dystonia

3 Mar. 2020

Speaker: Tobias Bäumer
University Hospital Schleswig-Holstein, Lübeck, Germany

Recording

Slides

Immune-mediated choreas

Immune-mediated choreas

21 Jan. 2020

Speaker: Jan Lewerenz
University Hospital Ulm, Germany

Recording

Slides

The Inherited Ataxias

The Inherited Ataxias

14 Jan. 2020

Speaker: Paola Giunti
UCL Queen Square Institute of Neurology, London, United Kingdom

Recording

Slides

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Webinar Schedule

Latest News

  • 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

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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/online-medical-education-for-rare-neurological-diseases/

  • Get to this post

    ERN-RND @ern-rnd.bsky.social 6 days

    💻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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    ERN-RND @ern-rnd.bsky.social 2 weeks

    💻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 2 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...

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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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