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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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Posted on February 16, 2023 Full size 1200 × 111

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Published inERN-RND-EU-1200×111

Webinar Schedule

Latest News

  • Treatabolome for Dominant Ataxias – Interview David Gomez

    September 8, 2025
    For some rare paediatric ataxias treatments do exist, but unfortunately they are not always well-known. In oder to accelerate diagnosis …read more »

  • ePAG visit at Children’s Hospital Sant Joan de Déu, Barcelona

    July 7, 2025
    Having a rare disease means spending a lot of time around doctors and hospitals. Places, that even adults will not …read more »

  • 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 »

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ERN-RND

@ern-rnd.bsky.social

157 Followers 88 Following 153 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/online-medical-education-for-rare-neurological-diseases/

  • Get to this post

    ERN-RND @ern-rnd.bsky.social 12 hours

    💻U#webinar#webinar on “Neurological and Non-Neurological Aspects in Palliative Care of FTD and PPA Patients”
    📅16th September, 3:00 CEST
    🗣️Renate Wahl, University Hospital Aachen, Germany
    Sighttps://t1p.de/j8mlcde/j8mlc
    Joint w/ the European Reference Network for Rare Neuromuscular Diseases and
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 12 hours

    #DystoniaAwarenessMonth: Do you know our #PatientJourney for #CervicalDystonia? It is available in 13 EU languages and free to download! For example in
    Dutch: www.ern-rnd.eu/patientenrei...
    Hungarian: www.ern-rnd.eu/betegut-cerv...
    Spanish: www.ern-rnd.eu/patient-jour...
  • Get to this post

    European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 1 day

    FREE EPNS Educational webinar - Wed 8 October 5pm CET

    Registration now open!

    us02web.zoom.us/webinar/regi...
  • Get to this post

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

    For some rare paediatric ataxias treatments do exist, but they are not always well-known. To accelerate diagnosis & therefore a faster treatment our member David Gomez has set up a #Treatabolome for Dominant Ataxias - a database for gene & variant specific treatments

    www.youtube.com/watch?v=8DkQ...
  • Get to this post

    JARDIN Joint Action @jardinjointaction.bsky.social 4 days

    💡 ▶️ New video tutorial for patient representatives involved in the development of care pathways.

    Learn:
    ✅ What care pathways are
    ✅ JARDIN’s model
    ✅ The role of patient representatives at each stage of the process

    🎥 Watch it here! ➡️ jardin-ern.eu/new/patient-...

    #RareDiseases #EU4Health #JARDIN
  • Get to this post

    European Brain Council (EBC) @braincouncil.eu 5 days

    🚨 Explore the programme for the #BrainDays @ UNGA80!

    🧠 From global R&I to #BrainHealth equity & #BrainCapital, speakers from across the world will converge on tangible actions for a brain-healthier future.

    🔗 Join us in #NYC on 24–26 Sept: braincouncil.eu/programme-un...
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    ERN-RND @ern-rnd.bsky.social 5 days

    Get the latest news on #RareNeurologicalDiseases with our monthly newsletter - and don't miss our free webinars and many upcoming events: www.ern-rnd.eu?mailpoet_rou...

    #RareDisease #RareDiseases #HSP #Dystonia #HutingtonDisease #Ataxia #FriedreichAtaxia #Leukodystrophy #FrontotemporalDementia

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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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