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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

Social and life style issues related to ataxias and HSP

Social and life style issues related to ataxias and HSP

13 January 2026 | 3 – 4 pm CET
Zoom Registration

Speaker: Lotte van de Venis and Lori Renna Linton
Radboud University Meidcal Center, Nijmegen, the Netherlands, Euro-HSP

Fluid Biomarkers in FTD

Fluid Biomarkers in FTD

02 December 2025 | 3 – 4 pm CET
Zoom Registration

Speaker: Domenico Plantone
AOU – University Hospital Siena, Italy

Recent Advances in Episodic Ataxias

Recent Advances in Episodic Ataxias

18 November 2025 | 3 – 4 pm CET
Zoom Registration

Speaker: Elisabetta Indelicato and David Pellerin
Medical University Innsbruck, Austria & Miller School of Medicine, Miami, USA

Social and Lifestyle Issues Related to FTD and PPA

Social and Lifestyle Issues Related to FTD and PPA

30 Sep. 2025 | 3 – 4 pm CEST
Zoom Registration

Speaker: Alexa Häger
University Hospital Aachen, Germany

Recording

Patient Journeys: Reliable Comprehensive Documents which Summarise a Rare Disease

Patient Journeys: Reliable Comprehensive Documents which Summarise a Rare Disease

23 Sep. 2025 | 3 – 4 pm CEST
Zoom Registration

Speaker: Petya Mihaylova & Mary Kearney
Irish Consortium: Tallaght University Hospital and Children’s Health Ireland & FARA Ireland

Recording

Slides

Introduction – systematics of non-neurological aspects

Introduction – systematics of non-neurological aspects

Winter school 2025 “Challenges of treating rare neurological diseases”
14 Mar. 2025

Speaker: Michèl Willemsen
Radboudumc, Nijmegen, The Netherlands

Recording

Autoimmune parkinsonism

Autoimmune parkinsonism

25 Jun. 2024

Speaker: Jeroen Kerstens
Antwerp University Hospital, Belgium

Recording

Dystonic Crisis and Reactions

Dystonic Crisis and Reactions

Winter school 2024 “DBS in dystonia”
17-19 Apr. 2024

Speaker: Victoria Gonzalez
Clinic

Recording

Strategies of DBS Troubleshooting in Dystonia

Strategies of DBS Troubleshooting in Dystonia

Winter school 2024 “DBS in dystonia”
17-19 Apr. 2024

Speaker: Norbert Kovacs
Italy Azienda Ospedaliero-Universitaria Siena

Recording

MER and LFP Signals for Implantation and Programming in Dystonia Patients

MER and LFP Signals for Implantation and Programming in Dystonia Patients

Winter school 2024 “DBS in dystonia”
17-19 Apr. 2024

Speaker: Nicolo Pozzi
University of Würzburg, Germany

Recording

Combined and Complex Dystonias

Combined and Complex Dystonias

Winter school 2024 “DBS in dystonia”
17-19 Apr. 2024

Speaker: Norbert Brueggemann
Clinic

Recording

The spectrum of genetic synucleinopathies

The spectrum of genetic synucleinopathies

12 Mar. 2024

Speaker: Leonidas Stefanis
University of Athens Medical School, Athens, Greece

Recording

Huntington disease: new insights into molecular pathogenesis and therapeutic opportunities

Huntington disease: new insights into molecular pathogenesis and therapeutic opportunities

6 Feb. 2024

Speaker: Sarah Tabrizi
UCL Queen Square Institute of Neurology, London, UK

Recording

Friedreich Ataxia

Friedreich Ataxia

12 Sep. 2023

Speaker: Kathrin Reetz
RWTH-University Hospital Aachen, Germany

Slides

Dissecting Fahr’s Disease

Dissecting Fahr’s Disease

13 Jun. 2023

Speaker: Amit Batla & Francesca Magrinelli
Institute of Neurology, University College London, UK

Recording

Slides

Frontotemporal dementia vs. primary psychiatric disorders

Frontotemporal dementia vs. primary psychiatric disorders

23 May 2023

Speaker: Tim van Langenhove
University Hospital Ghent, Belgium

Slides

Use of Biomarkers to monitor the presymptomatic phase of Genetic FTD: research advances for clinical trial readiness

Use of Biomarkers to monitor the presymptomatic phase of Genetic FTD: research advances for clinical trial readiness

22 Nov. 2022

Speaker: Harro Seelaar & Dario Saracino
Erasmus University Medical Center, Rotterdam, Netherlands;
APHP – Pitié-Salpêtrière Hospital, Paris, France

Slides

DBS in Dystonia – Targets, programming and therapeutic challenges

DBS in Dystonia – Targets, programming and therapeutic challenges

18 Oct. 2022

Speaker: Philipp Capetian
University Hospital Würzburg, Germany

Slides

Krabbe disease – natural history and treatment options

Krabbe disease – natural history and treatment options

11 Oct. 2022

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

Recording

Slides

CACNA1A-related disorders: clinical presentation and therapeutic options

CACNA1A-related disorders: clinical presentation and therapeutic options

4 Oct. 2022

Speaker: Elisbetta Indelicato
Medical University Innsbruck, Austria

Slides

Tau-targeting Therapies: Where are we heading to?

Tau-targeting Therapies: Where are we heading to?

20 Sep. 2022

Speaker: Günter Höglinger
Medical Schhol Hannover, Germany

Recording

Vanishing white matter

Vanishing white matter

13 Sep. 2022

Speaker: Marjo van der Knaap
VU University Medical Center Amsterdam, Netherlands

Recording

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

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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 2 days

    💻 Upcoming #webinar on “The importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders”
    📅 9th December
    ⚠️Updated time: now at 1 PM CET.
    🗣️ Maria Judit Molnar, Semmelweis University, Budapest, Hungary
    Sign up 👉https://t1p.de/d825https://t1p.de/d825hps://bsky.app/hashtag/webinar">#webinar and
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    ERN-RND @ern-rnd.bsky.social 2 days

    One last time #RareNeurologicalDisease news and events in 2025! Stay up to date with the latest developments in rare neurological disorders — including #HuntingtonDisease, #HSP, #Dystonia, #MSA, #Leukodystrophies, #FrontotemporalDementia — with our monthly newsletter: https://f.mtr.cool/nvtixiqcex
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    ERN-RND @ern-rnd.bsky.social 3 days

    Join us for this "High Level Meeting on a European Innovation and Care Ecosystem for Rare and Complex Diseases" on December 9-12, 2025 - remotely. More information: www.brains4brain.eu/eu-activitie...
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    ERN-RND @ern-rnd.bsky.social 3 days

    Children with GNAO1-related disorders often face developmental delays and challenging movement disorders. For some, #DeePBrainStimulation can be a life-changing intervention. To support parents during this process, our members at Hospital #DeePBrainStimulation createdinformation flyers. #GNAO1
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    ERN-RND @ern-rnd.bsky.social 3 days

    📢 !NEW TIME!
    👉 Our free webinar with Maria Judit Molnar on #GeneticCounselling for #RareNeurologicalDiseases next week will be at 1pm CET instead of the usual time at 3 pm.
    If you haven't registered yet, don't miss out and join us next Tuesday: t1p.de/d825h
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 5 days

    💻 Upcoming #webinar on “The importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders”
    📅 9th December, 3:00 CET
    🗣️ Maria Judit Molnar, Semmelweis University, Budapest, Hungary

    Sign up 👉https://t1p.de/d825https://t1p.de/d825htps://bsky.app/hashtag/webinar">#webinar and
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 5 days

    💻 Upcoming #webinar on “Fluid Biomarkers in Frontotemporal Dementia”
    📅 2nd December, 3:00 CET
    🗣️ Domenico Plantone, AOU - University Hospital Siena, Italy

    Sign up 👉https://t1p.de/9hsbhttps://t1p.de/9hsbctps://bsky.app/hashtag/webinar">#webinar and

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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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