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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: General Aspects

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

Patient Journeys as working documents to identify gaps in care and adapt care pathways and better meet the needs of patients

Patient Journeys as working documents to identify gaps in care and adapt care pathways and better meet the needs of patients

23 Sep Apr. 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

Clinical neurophysiology in dystonia

Clinical neurophysiology in dystonia

16 Jan. 2024

Speaker: Sylvia Bösch
Medical University Innsbruck, Austria

Recording

Slides

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

Introduction Radiotracer Imaging

Introduction Radiotracer Imaging

Winter school 2023 “Neuroimaging”
25 Mar. 2023 | 3 – 4 pm CEST

Speaker: Jan Booij
Amsterdam University Medical Center, The Netherlands

Recording

Slides

Introduction in Structural Imaging

Introduction in Structural Imaging

Winter school 2023 “Neuroimaging”
25 Mar. 2023 | 3 – 4 pm CEST

Speaker: Eva Bültmann
Medical University Hannover, Germany

Recording

Slides

Introduction to Functional MRI & Applications to Neurological Diseases

Introduction to Functional MRI & Applications to Neurological Diseases

Winter school 2023 “Neuroimaging”
25 Mar. 2023 | 3 – 4 pm CEST

Speaker: Edoardo Gioele Spinelli
San Raffaele Scientific Institute, Milan, Italy

Recording

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

When is it appropriate to suspect a metabolic disorder in a child with chorea?

When is it appropriate to suspect a metabolic disorder in a child with chorea?

8 Nov. 2022

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

Recording

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

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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 2 hours

    #FriedreichAtaxia (FA) is progressive, meaning what you can do keeps changing. When you think you have gotten to understand FA, something new happens - says Brona Kearney, who has been living with FA for the past 23 years.
    How does this disease affect a patient's life? This is Brona's story.
  • Get to this post

    EHDN News @ehdn-news.bsky.social 5 hours

    Listen to our latest podcast! www.youtube.com/watch?v=fEg4...
  • Get to this post

    EHDN News @ehdn-news.bsky.social 5 hours

    Our 55th issue opens with a tribute to our much-loved and sadly missed colleague, Tim McLean. Highlights include a call to action from EHDN’s HEATED task force, clinical trial updates, and an interview with Daniel Claassen, Chief Executive Officer @ Huntington Study Group: ehdn.org/wp-content/u...
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 23 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 EuroBloodNet @erneurobloodnet.bsky.social 6 days

    💻​Don't miss the ERN-EuroBloodNet #ThursdayWebinar session on "Gene therapy for Pyruvate Kinase Deficiency and Congenital Dyserythropoietic Anemia Type II”!

    🗓️3rd July - 17:00h CEST.
    👉Registrations: eurobloodnet.eu/education/th...

    #ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #hematology
  • Get to this post

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

    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

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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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