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

Domain: Treatment/Therapy

Genetic forms of parkinson

14 Sep. 2021

Speaker: Thomas Gasser
University Hospital Tübingen, Germany

Recording

Slides

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

18 May 2021

Speaker: Kathryn Peall
Neurosciences and Mental Health Research Institute, Cardiff, United Kingdom

Recording

Gene therapy in neuromuscular and mitochondrial disorders

11 May 2021

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

Recording

Slides

Challenges in Frontotemporal Dementia: clinical, genetic and pathological heterogeneity

23 Mar. 2021

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

Recording

Myoclonus dystonia

9 Mar. 2021

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

Recording

Slides

Genetic dystonia and treatment

2 Feb. 2021

Speaker: Sylvia Boesch
Medical University Innsbruck, Austria

Slides

Rehabilitation in ataxia: current evidence and practice

10 Nov. 2020

Speaker: Ludger Schöls
University Hospital Tübingen, Germany

Recording

Slides

Non-invasive stimulation for ataxias

3 Nov. 2020

Speaker: Bart van de Warrenburg
Radboud University Medical Center, Nijmegen, Netherlands

Recording

Slides

Clinical practice recommendations for physical therapy for Huntington’s disease

20 Oct. 2020

Speaker: Bernhard Landwehrmeyer
University Hospital Ulm, Germany

Recording

Slides

Treatment of spasticity in HSP and leukodystrophies

6 Oct. 2020

Speaker: Annemieke Buizer & Laura Bonouvrié
VU University Medical Center Amsterdam, Netherlands

Recording

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

Semantic variant of primary progressive aphasia

8 Sep. 2020

Speaker: Robert Rusina
Thomayer Hospital, Prague, Czech Republic

Recording

Slides

Gait rehabilitation in people with hereditary spastic paraplegia & Respiratory physiotherapy in parkinson’s plus syndromes

14. July. 2020

Speaker: Jorik Nonnekes & Martin Srp
Radboud University Medical Centre, Nijmegen, Netherlands;
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

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

Recognizing atypical parkinsonism

14 Apr. 2020

Speaker: Wassilios Meissner
Institute of Neurodegenerative Disorders, CHU – University Hospital Bordeaux, France

Recording

Slides

X-linked Adrenoleukodystrophy

17 Mar. 2020

Speaker: Marc Engelen
VU University Medical Center Amsterdam, Netherlands

Recording

Slides

Ultrasound diagnostics for cervical dystonia

3 Mar. 2020

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

Recording

Slides

Immune-mediated choreas

21 Jan. 2020

Speaker: Jan Lewerenz
University Hospital Ulm, Germany

Recording

Slides

The inherited ataxias

14 Jan. 2020

Speaker: Paola Giunti
UCL Queen Square Institute of Neurology, London, United Kingdom

Recording

Slides

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

130 Followers 82 Following 96 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 7 hours

    FREE MOOC “Diagnosing Rare Diseases: from the Clinic to Research and back” - from Monday, May 12, until Friday, July 4
    www.futurelearn.com/courses/rare...
    Co-developed with the ERNs ITHACA and GENTURIS, www.futurelearn.com/courses/rare... and the Fondation Maladies Rares.
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 13 hours

    💻 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

    European Journal of Neurology @europeanjournalofneurology.ean.org 1 day

    📈 Trending article "Stratifying Multiple Sclerosis Susceptibility Risk: The Role of HLA‐E*01 and Infectious Mononucleosis in a Population Cohort" by Nova et al. shows HLA-E*01:01 carriers with IM are at increased risk of MS.

    📖 buff.ly/mZrlCHQ

    @ean.org #WileyNeuro
    #Neurology #MultipleSclerosis
  • Get to this post

    ERN EuroBloodNet @erneurobloodnet.bsky.social 3 days

    🩸​ERN-EuroBloodNet is a collaborative network aiming to improve the healthcare services of complex or rare hematological diseases & conditions that require highly specialized treatment in Europe.

    🔔​Follow us & stay up to date on rare haematological diseases!

    youtu.be/QMc5YdA6-44?...
  • Get to this post

    The German Human Genome-Phenome Archive @ghga.bsky.social 2 weeks

    🎬 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...

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