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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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    • Cerebellar Ataxia & Hereditary Spastic Paraplegias (HSPs)
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Disease Group: Frontotemporal dementia

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

Treatment of nano-rare neurological diseases

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

Speaker: Marlen Lauffer
Leiden University Medical Center​, The Netherlands

Recording

Treatment of Aromatic l-amino acid decarboxylase (AADC) deficiency

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

Speaker: Thomas Opladen
University Children’s Hospital Heidelberg, Germany

Recording

Genetic therapies and therapy developments for rare movement disorders

23 Jul. 2024

Speaker: Willeke van Roon-Mom
Leiden University medical center, Netherlands

Recording

Neuropsychological assessment in primary progressive aphasia – recommendations and pitfalls in clinical practice

27 Feb. 2024

Speaker: Lize Jiskoot
Erasmus Medical Center Rotterdam, Netherlands

Recording

Frontotemporal dementia vs. primary psychiatric disorders

23 May 2023

Speaker: Tim van Langenhove
University Hospital Ghent, Belgium

Slides

Non-pharmacological approaches to treatment in svPPA

9 May 2023

Speaker: Ana Sofia Costa
RWTH-University Hospital Aachen, Germany

Recording

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

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

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

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

Recording

Slides

Neuroimaging in frontotemporal dementias

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

Speaker: Vassilis Constantinides
Eginitio University Hospital Athens, Greece

Recording

Slides

FTD- in whom, when and how genetic testing should be applied

14 Mar. 2023

Speaker: Laura Donker Kaat
Erasmus Medical Center Rotterdam, Netherlands

Recording

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

Telerehabilitation in RND: an update

15 Nov. 2022

Speaker: Luigi Lavorgna
University Luigi Vanvitelli, Neaples, Italy

Recording

Slides

Tau-targeting Therapies: Where are we heading to?

20 Sep. 2022

Speaker: Günter Höglinger
Medical Schhol Hannover, Germany

Recording

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

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

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

Functional gait disorders: a sign-based approach

12 Oct. 2021

Speaker: Jorik Nonnekes
Radboud University Medical Centre, Nijmegen, Netherlands

Recording

Slides

Gene therapy in neuromuscular and mitochondrial disorders

11 May 2021

Speaker: Thomas Klopstock
Ludwig Maximilian University Hospital, Munich, Germany

Recording

Slides

Better Conversations – Communication Partner Training for language led dementias

4 May 2021

Speaker: Anna Volkmer
University College London, United Kingdom

Recording

Slides

Challenges in Frontotemporal Dementia: clinical, genetic and pathological heterogeneity

23 Mar. 2021

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

Recording

Functional movement disorders: a diagnostic guide

1 Dec. 2020

Speaker: Christos Ganos
Charité, University Medicine Berlin, Germany

Recording

Slides

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

How to assess and manage spastic gait in rare diseases

10 Sep. 2020

Speaker: Gál Ota
Charles University and General University Hospital, Prague, Czech Republic

Recording

Slides

Semantic variant of primary progressive aphasia

8 Sep. 2020

Speaker: Robert Rusina
Thomayer Hospital, Prague, Czech Republic

Recording

Slides

Goal setting and outcome measures of interventions in pediatric rehabilitation.

18 Jun. 2020

Speaker: Annemieke Buizer
VU University Medical Center Amsterdam, Netherlands;
Emma Children’s Hospital, Amsterdam, Netherlands

Slides

Primary progressive aphasia subtyping in clinical practice

26 May. 2020

Speaker: Rik Vandeberghe
University Hospital Leuven, Belgium

Recording

Slides

Webinar Schedule

Latest News

  • Clinical Practice for Primary Progressive Aphasia (PPA) – Interview with Robert Rusina

    May 5, 2025
    It takes „about one year from the first symptoms to the first consultation of a physician, and another one year …read more »
  • Survey on Myoclonus Dystonia Syndrome

    April 10, 2025
    Myoclonus-dystonia syndrome (MDS) is a genetic movement disorder with childhood-onset, most frequently caused by SGCE defects. For this survey two …read more »
  • The Importance of Newborn Screening for Metachromatic Leukodystrophy (MLD)

    April 7, 2025
    MLD is a neurodegenerative disorder, that affects children at a very young age, leading to a premature death. In a …read more »

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ERN-RND

@ern-rnd.bsky.social

128 Followers 80 Following 94 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/

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    Der Code des Lebens @dercodedeslebens.bsky.social 3 days

    📣 Neue Folge: Von Basenpaaren und Bytes
    Das menschliche Genom hat 3 Milliarden Basenpaare – eine riesige Datenflut, die nur mit Bioinformatik zu bewältigen ist. Camill Kaipf erklärt, wie man in dieses Feld kommt und warum eine sichere IT-Infrastruktur so wichtig ist.
    🎧 t1p.de/xebt4
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    The German Human Genome-Phenome Archive @ghga.bsky.social 1 week

    🎬 In case you missed our webinar on Benchmarking and quality control for genomic variant calling with Johannes Köster., you can now watch the recordings on our Training Website: www.ghga.de/resources/tr...
    The slides are also available on GHGA GitHub: github.com/GHGA-Trainin...
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    ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social 2 weeks

    Erksplain - Kidney Transplantation 🚨

    Kidney transplants save lives — but the average wait is 6–8 years.
    Deceased donors are matched by urgency and compatibility.
    Most people can donate — just register or tell your family! 💡

    Organ donation = a true gift of life. 🌍

    #KidneyTransplant #SaveLives
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    ERN-RND @ern-rnd.bsky.social 2 weeks

    💻 U#webinar#webinar on “Recent Advances in Clinical Trials in Multiple System Atrophy”
    📅 20th May, 3:00 CEST
    🗣️ David Bendetowicz, University Hospital Bordeaux, France
    Sign https://t1p.de/ri7k3de/ri7k3
    Joint with the European Reference Network for Rare Neuromuscular Diseases and
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    ERN-RND @ern-rnd.bsky.social 2 weeks

    💻 U#webinar#webinar on “Neurogeriatric Aspects in Rare Forms of Ataxia and HSP”
    📅 13th May, 3:00 CEST
    🗣️ Eleni Zamba-Papanicolaou, Cyprus Institute of Neurology and Genetics
    Sign https://t1p.de/v8r2hde/v8r2h
    Joint with the European Reference Network for Rare Neuromuscular Diseases 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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