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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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    • … for rare neurological diseases
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    • Cerebellar Ataxia & Hereditary Spastic Paraplegias (HSPs)
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      • EJP RD
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Domain: Communicating and counselling patients

Social and life style issues related to ataxias and HSP

Social and life style issues related to ataxias and HSP

13 January 2026 | 3 – 4 pm CET
Zoom Registration

Speaker: Lotte van de Venis and Lori Renna Linton
Radboud University Meidcal Center, Nijmegen, the Netherlands, Euro-HSP

Social and Lifestyle Issues Related to FTD and PPA

Social and Lifestyle Issues Related to FTD and PPA

30 Sep. 2025 | 3 – 4 pm CEST
Zoom Registration

Speaker: Alexa Häger
University Hospital Aachen, Germany

Recording

Treatment of spasticity in children with rare neurological disorders – who, why, when and what?

Treatment of spasticity in children with rare neurological disorders – who, why, when and what?

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

Speaker: Annemieke Buizer
Amsterdam UMC, The Netherlands

Recording

Treatment of nano-rare neurological diseases

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

Insights into growing up in families affected by Huntington’s disease

Insights into growing up in families affected by Huntington’s disease

28 Nov. 2023

Speaker: Siri Kjølaas
Oslo University Hospital, Centre for rare disorders, Oslo, Norway

Recording

Slides

X-Linked leukodystrophies – Update

X-Linked leukodystrophies – Update

7 Oct. 2021

Speaker: Caroline Sevin
Reference Center for Leukodystrophies, Hôpital de Bicêtre and ICM (institute of Brain and Spine), Paris, France

Recording

Slides

Webinar Schedule

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ERN-RND

@ern-rnd.bsky.social

172 Followers 90 Following 215 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/

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

    💻 Upcoming #webinar on “The importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders”
    📅 9th December
    ⚠️Updated time: now at 1 PM CET.
    🗣️ Maria Judit Molnar, Semmelweis University, Budapest, Hungary
    Sign up 👉https://t1p.de/d825https://t1p.de/d825hps://bsky.app/hashtag/webinar">#webinar and
  • Get to this post

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

    One last time #RareNeurologicalDisease news and events in 2025! Stay up to date with the latest developments in rare neurological disorders — including #HuntingtonDisease, #HSP, #Dystonia, #MSA, #Leukodystrophies, #FrontotemporalDementia — with our monthly newsletter: https://f.mtr.cool/nvtixiqcex
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    ERN-RND @ern-rnd.bsky.social 3 days

    Join us for this "High Level Meeting on a European Innovation and Care Ecosystem for Rare and Complex Diseases" on December 9-12, 2025 - remotely. More information: www.brains4brain.eu/eu-activitie...
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    ERN-RND @ern-rnd.bsky.social 3 days

    Children with GNAO1-related disorders often face developmental delays and challenging movement disorders. For some, #DeePBrainStimulation can be a life-changing intervention. To support parents during this process, our members at Hospital #DeePBrainStimulation createdinformation flyers. #GNAO1
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    ERN-RND @ern-rnd.bsky.social 3 days

    📢 !NEW TIME!
    👉 Our free webinar with Maria Judit Molnar on #GeneticCounselling for #RareNeurologicalDiseases next week will be at 1pm CET instead of the usual time at 3 pm.
    If you haven't registered yet, don't miss out and join us next Tuesday: t1p.de/d825h
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    ERN-RND @ern-rnd.bsky.social 5 days

    💻 Upcoming #webinar on “The importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders”
    📅 9th December, 3:00 CET
    🗣️ Maria Judit Molnar, Semmelweis University, Budapest, Hungary

    Sign up 👉https://t1p.de/d825https://t1p.de/d825htps://bsky.app/hashtag/webinar">#webinar and
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    ERN-RND @ern-rnd.bsky.social 5 days

    💻 Upcoming #webinar on “Fluid Biomarkers in Frontotemporal Dementia”
    📅 2nd December, 3:00 CET
    🗣️ Domenico Plantone, AOU - University Hospital Siena, Italy

    Sign up 👉https://t1p.de/9hsbhttps://t1p.de/9hsbctps://bsky.app/hashtag/webinar">#webinar 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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