Skip to content
  • Facebook
  • LinkedIn
  • Bluesky
  • YouTube
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

Members Area
  • Home
  • About us
    • What is an ERN
    • Cross border healthcare
    • What is ERN-RND
    • Objectives of ERN-RND
    • Diseases Groups Covered
    • ERN-RND coordinators
    • ERN-RND coordination office
    • ERN-RND board
    • Patient advocates
    • Work Packages
    • Monitoring
    • Publications Acknowledging ERN-RND
  • Expert Centres
    • … for rare neurological diseases
    • Full members and affiliated partners
    • How to contact expert centres
    • Supporting partners
    • Videos from our members
    • Overview ERNs
  • Online case discussion with CPMS 2.0
    • What is the CPMS
    • Who can use it
    • How to use it
    • MLD Treatment eligibility panel
    • Neuroradiology Expert Advice Panel
    • Multidisciplinary Board for DBS in Dystonia
    • CPMS Helpdesk
    • Videos
    • Downloads
    • Websites
  • Disease Knowledge
    • Cerebellar Ataxia & Hereditary Spastic Paraplegias (HSPs)
    • Chorea & Huntington’s disease
    • Dystonias, NBIA and Paroxysmal Disorders
    • Frontotemporal dementia
    • Leukodystrophies
    • Atypical Parkinsonism: MSA, PSP & Genetic Parkinson’s Disease
    • ERN-RND Patient Journeys
  • Education & Training
    • Webinars
    • Past webinars
    • Winter School
  • ERN-RND Registry
    • ERN-RND registry objectives
    • Disease Groups covered
    • Data Submission
      • Data Analysis 2023
    • Data Access
    • Contact
  • Collab­ora­tions
    • Projects
    • Partner organisations
    • Past projects
      • EJP RD
        • EJP RD in a nutshell
        • What is EJP RD?
        • EJP RD mission & goals
        • EJP RD & ERNs
      • Solve-RD
        • What is Solve-RD?
        • Main Objectives
        • Implementation Steps
        • Analysis
      • Value of Treatment (VoT) project
        • VoT project coordinator
        • Objectives of the VoT project
        • ERN-RND in VoT2
        • Academic partners in VoT2
        • Further reading
  • News & Events
    • News
    • Events
    • Newsletter
    • Meet the members
  • Contact us
  • Facebook
  • LinkedIn
  • Bluesky
  • YouTube

Disease Group: Dystonias, NBIA and Paroxysmal Disorders

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

RCT on intrathecal baclofen for dystonia

30 June 2020

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

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

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

Ultrasound diagnostics for cervical dystonia

3 Mar. 2020

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

Recording

Slides

Clinical evaluation of dystonia

4 Feb. 2020

Speaker: Kailash Bhatia
UCL Queen Square Institute of Neurology, London, United Kingdom

Recording

Posts pagination

Previous page Page 1 Page 2

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 »

Find us on Bluesky

ERN-RND

@ern-rnd.bsky.social

126 Followers 78 Following 93 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 13 hours

    It takes „about 1 year from the first symptoms to the first consultation of a physician, and another 1 year to reach a diagnosis", before patients are sent to specialized centres: ERNs. Find out how clinical practice for this language & speech disorder in our centers looks like:
  • Get to this post

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

    💻 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
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 2 days

    💻 U#webinar#webinar on “Palliative Care in Chorea and Huntington's Disease”
    📅 6th May, 3:00 CEST
    🗣️ Jean-Marc Burgunder, Universtiy of Bern, Switzerland, Neurology Clinic
    Sign https://t1p.de/81f43de/81f43
    Joint with the European Reference Network for Rare Neuromuscular Diseases and
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 2 days

    Get your #RareNeurologicalDisease updates every month with our #newsletter and don't miss out on news on the network, free webinars and winter schools, participation calls, new publications, events and many more. Find our newsletter here and subscribe (bottom): www.ern-rnd.eu?mailpoet_rou...
  • Get to this post

    ERDERA @erdera.bsky.social 2 days

    🔬 ERDERA at conference | 24–27 May | Milan & Online. Partners from #ERDERA will share key insights on diagnostics and rare diseases at this major genetics event. 🔬 Join us to connect, exchange knowledge and explore future collaborations 💫 #eshg2025

Find us on Facebook

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

  • Facebook
  • LinkedIn
  • Bluesky
  • YouTube

Sitemap | Disclaimer and Data Protection

We serve cookies on this site to analyse traffic, remember your preferences, and optimise your experience.OKNo 3rd party cookiesData-Protection