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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

Members Area
  • Home
  • About us
    • What is an ERN
    • Cross border healthcare
    • What is ERN-RND
    • Objectives of ERN-RND
    • Diseases Groups Covered
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    • ERN-RND coordination office
    • ERN-RND board
    • Patient advocates
    • Work Packages
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    • Publications Acknowledging ERN-RND
  • Expert Centres
    • … for rare neurological diseases
    • Full members and affiliated partners
    • How to contact expert centres
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    • Overview ERNs
  • Online case discussion with CPMS
    • 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
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    • Videos
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  • 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
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    • Webinars
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    • ERN-RND registry objectives
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      • Data Analysis 2023
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  • Collab­ora­tions
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      • EJP RD
        • EJP RD in a nutshell
        • What is EJP RD?
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      • Solve-RD
        • What is Solve-RD?
        • Main Objectives
        • Implementation Steps
        • Analysis
      • Value of Treatment (VoT) project
        • VoT project coordinator
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Care standards – Guidelines – Chorea & Huntington’s disease

Guidelines for Huntington’s disease

Translated to French:

  • Guide clinique international pour le traitement de la maladie de Huntington

Translated to German:

  • Internationale Guideline für die Behandlung der Huntington-Krankheit

Translated to Spanish:

  • Guia internacional de practica clinica para el tratamiento de la enfermedad de Huntington

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 »

Find us on Bluesky

ERN-RND

@ern-rnd.bsky.social

139 Followers 84 Following 107 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

    ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social 3 days

    Upcoming ERKNet Webinar! 📢

    📝Topic: Anti-Factor H Auto-Antibodies
    🗓️ Date: June 24, 2025
    ⏰ Time: 4:00–5:00 PM CET
    👩‍⚕️ Speaker: Michal Malina

    👉 Register now: register.gotowebinar.com/register/711...

    🌞ERKNet webinars will take a summer break after this session. We wish everyone a wonderful summertime!
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 3 days

    Learn more about #RareNeurologicalDisease s in our monthly #newsletter:
  • Get to this post

    ERDERA @erdera.bsky.social 3 days

    Make your voice heard! 🗣️ #ERDERA has launched a survey to explore how #RareDisease patients can contribute to EU-funded research.
    🔐 Confidential & 🤝 Co-created with patients
    🔗 Take the survey: shorturl.at/ePVuL (open until mid-July)
    📄 Learn more: shorturl.at/c03db
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 4 days

    #Study on #MonogenicDystonia: Despite considerable achievements in genetics in #dystonias, their response to possible treatment such as #DeepBrainStimulation (DBS) remains to be elucidated. ERN-RND is performing a systematic review on the efficacy of #DBS.
  • Get to this post

    JARDIN Joint Action @jardinjointaction.bsky.social 5 days

    ❓ Have you heard of the #ERNs?

    🔎 Discover the 24 European Reference Networks and how they support people living with rare diseases or complex conditions across Europe.

    🌍 Visit the JARDIN website to explore them all!

    👉 jardin-ern.eu/european-ref...

    #RareDiseases #PatientVoice #EU4Health
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 4 weeks

    HSP stands for Hereditary Spastic Paraplegia. What is this disease about and how will it affect the future life of a patient? Need a quick overview in easy to understand? Check out our patient journeys for HSP - in many different languages: https://f.mtr.cool/obibsrmjft
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 4 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 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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