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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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    • … for rare neurological diseases
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    • Cerebellar Ataxia & Hereditary Spastic Paraplegias (HSPs)
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Domain: General Aspects

Importance of autopsies in leukodystrophies

Importance of autopsies in leukodystrophies

12 Jul. 2022

Speaker: Marianna Bugiani
VU University Medical Center Amsterdam, Netherlands

Recording

Slides

Basal ganglia diseases in childhood

Basal ganglia diseases in childhood

12 Apr. 2022

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

Slides

The logopenic variant of primary progressive aphasia (lvPPA): language, cognitive, neuroradiological issues’

The logopenic variant of primary progressive aphasia (lvPPA): language, cognitive, neuroradiological issues’

5 Apr. 2022

Speaker: Robert Rusina & Zsolt Cséfalvay
Thomayer Hospital, Prague, Czech Republic; Comenius University in Bratislava, Slovakia

Slides

Measuring disease severity in chronic progressive myelopathy

Measuring disease severity in chronic progressive myelopathy

15 Mar. 2022

Speaker: Marc Engelen
VU University Medical Center Amsterdam, Netherlands

Recording

Slides

Brain Development in Huntington’s Disease

Brain Development in Huntington’s Disease

8 Mar. 2022

Speaker: Peggy Nopoulos
Carver College of Medicine, University of Iowa, USA

Recording

Slides

The overlap between the spectrum of frontotemporal dementias and atypical Parkinsonism

The overlap between the spectrum of frontotemporal dementias and atypical Parkinsonism

8 Feb. 2022

Speaker: Vasilios Constantinides
National and Kapodistrian University of Athens, Greece.

Recording

Slides

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

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

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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/

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

    On October 10 we will focus on "Registries for RND" in our Scientific +Symposium. Do you want to join us online (and free of charge)? Then register here now: us02web.zoom.us/webinar/regi...

    Programme: www.ern-rnd.eu/wp-content/u...

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    ERN-RND Annual Meeting 2026 - Registration open

    on 10-11 October 2024 in Ljubljana,...
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    Learn more about registries in Rare Neurological Diseases in our Scientific #Symposium on October 10 - online and free of charge!

    For programme and registration click here: www.ern-rnd.eu/wp-content/u...

    #registry #RND #RareNeurologicalDisease
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    Stay informed on the latest developments in rare neurological diseases by subscribing to our #newsletter: www.ern-rnd.eu/mailpoet-ema...
    With updates on standards of care, clinical decision support tools, educational webinars, opportunities to participate in research and initiatives, events.
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    On #WorldBrainDay2026 we want to reflect on the remarkable progress that has been made in the field of Genetics. From small but meaningful advances to groundbreaking scientific breakthroughs, every step has brought us closer to a better future for people living with RND. youtu.be/hLP9lN4SULo?...
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    Interested in Registries for Rare Neurological Diseases? Then join our Scientific #Symposium on October 10 - online and free of charge!

    To see the programme and to register click here: www.ern-rnd.eu/wp-content/u...

    #registry #RND #RareNeurologicalDisease #RareNeurology #ERNs
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    Become an expert in Ataxias and HSPs with our UEMS certified postgraduate curriculum in the competency "Rare Neurological Diseases." Hosted at eanCampus

    Interested? Visit our website for more information: lnkd.in/eKdY5jpf

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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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