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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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  • About us
    • What is an ERN
    • Cross border healthcare
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  • Expert Centres
    • … for rare neurological diseases
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  • Online case discussion with CPMS
    • What is the CPMS
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  • Disease Knowledge
    • Cerebellar Ataxia & Hereditary Spastic Paraplegias (HSPs)
    • Chorea & Huntington’s disease
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Author: ERN-RND

Recording of webinar on Huntington’s disease & COVID-19 available

Recording of webinar on Huntington’s disease & COVID-19 available

Continue reading “Recording of webinar on Huntington’s disease & COVID-19 available”

Posted on April 8, 2020August 13, 2024Categories News 2020

6-7 April 2020 | SCA Global Conference CANCELLED

6-7 April 2020 | SCA Global Conference CANCELLED

Continue reading “6-7 April 2020 | SCA Global Conference CANCELLED”

Posted on April 7, 2020June 5, 2024Categories Past Events, Past Events 2020

Guidelines on EU Emergency Assistance in Cross-border Cooperation in Healthcare

Guidelines on EU Emergency Assistance in Cross-border Cooperation in Healthcare

Continue reading “Guidelines on EU Emergency Assistance in Cross-border Cooperation in Healthcare”

Posted on April 7, 2020August 13, 2024Categories News 2020

6 April 2020 | EHA & ERN-RND webinar: “Huntington’s disease and the Covid-19 pandemic – a difficult combination”

6 April 2020 | EHA & ERN-RND webinar: “Huntington’s disease and the Covid-19 pandemic – a difficult combination”

Continue reading “6 April 2020 | EHA & ERN-RND webinar: “Huntington’s disease and the Covid-19 pandemic – a difficult combination””

Posted on April 6, 2020June 5, 2024Categories Past Events, Past Events 2020

Solve-RD brokerage call open

Solve-RD brokerage call open

Continue reading “Solve-RD brokerage call open”

Posted on April 3, 2020August 13, 2024Categories News 2020

COVID-19: EURORDIS urges immediate action and proposes concrete solutions for rare disease patients

COVID-19: EURORDIS urges immediate action and proposes concrete solutions for rare disease patients

Continue reading “COVID-19: EURORDIS urges immediate action and proposes concrete solutions for rare disease patients”

Posted on April 2, 2020August 13, 2024Categories News 2020

Webinar on 6 April: “Huntington’s Disease & COVID-19 pandemic – a difficult combination”

Webinar on 6 April: “Huntington’s Disease & COVID-19 pandemic – a difficult combination”

Continue reading “Webinar on 6 April: “Huntington’s Disease & COVID-19 pandemic – a difficult combination””

Posted on April 1, 2020August 13, 2024Categories News 2020

European Commission launches COVID-19 Clinical Management Support System

European Commission launches COVID-19 Clinical Management Support System

Continue reading “European Commission launches COVID-19 Clinical Management Support System”

Posted on March 30, 2020August 13, 2024Categories News 2020

28-29 March 2020 | European Conference on the Diffusion of Genomic Medicine CANCELLED

28-29 March 2020 | European Conference on the Diffusion of Genomic Medicine CANCELLED

Continue reading “28-29 March 2020 | European Conference on the Diffusion of Genomic Medicine CANCELLED”

Posted on March 29, 2020June 5, 2024Categories Past Events, Past Events 2020

25-27 March 2020 | 10th International Meeting on Neuroacanthocytosis Syndromes

25-27 March 2020 | 10th International Meeting on Neuroacanthocytosis Syndromes

Continue reading “25-27 March 2020 | 10th International Meeting on Neuroacanthocytosis Syndromes”

Posted on March 27, 2020June 5, 2024Categories Past Events, Past Events 2020

21 April 2020 | ERN-RND webinar “hypomyelination” (paediatric focus)

21 April 2020 | ERN-RND webinar “hypomyelination” (paediatric focus)

Continue reading “21 April 2020 | ERN-RND webinar “hypomyelination” (paediatric focus)”

Posted on March 25, 2020June 5, 2024Categories Past Events, Past Events 2020

EAN Congress 2020 moves online

EAN Congress 2020 moves online

Continue reading “EAN Congress 2020 moves online”

Posted on March 25, 2020August 13, 2024Categories News 2020

16-22 March 2020 | Brain Awareness Week

16-22 March 2020 | Brain Awareness Week

Continue reading “16-22 March 2020 | Brain Awareness Week”

Posted on March 22, 2020June 5, 2024Categories Past Events, Past Events 2020

ECRD 2020 moves online

ECRD 2020 moves online

Continue reading “ECRD 2020 moves online”

Posted on March 18, 2020August 13, 2024Categories News 2020

EFNA launches survey on stigma & neurological conditions

EFNA launches survey on stigma & neurological conditions

Continue reading “EFNA launches survey on stigma & neurological conditions”

Posted on March 18, 2020August 13, 2024Categories News 2020

17 March 2020 | ERN-RND webinar “X-linked adrenoleukodystrophy” (adult/paediatric focus)

17 March 2020 | ERN-RND webinar “X-linked adrenoleukodystrophy” (adult/paediatric focus)

Continue reading “17 March 2020 | ERN-RND webinar “X-linked adrenoleukodystrophy” (adult/paediatric focus)”

Posted on March 17, 2020June 5, 2024Categories Past Events, Past Events 2020

It’s #BrainAwarenessWeek 2020

It’s #BrainAwarenessWeek 2020

Continue reading “It’s #BrainAwarenessWeek 2020”

Posted on March 16, 2020August 13, 2024Categories News 2020

11-14 March 2020 | RE(ACT) Congress & IRDiRC Conference

11-14 March 2020 | RE(ACT) Congress & IRDiRC Conference

Continue reading “11-14 March 2020 | RE(ACT) Congress & IRDiRC Conference”

Posted on March 14, 2020June 5, 2024Categories Past Events, Past Events 2020

European Reference Networks are 3 years old

European Reference Networks are 3 years old

Continue reading “European Reference Networks are 3 years old”

Posted on March 13, 2020August 13, 2024Categories News 2020

3-6 March 2020 | NAF’s Ataxia Investigators meeting – CANCELLED

3-6 March 2020 | NAF’s Ataxia Investigators meeting – CANCELLED

Continue reading “3-6 March 2020 | NAF’s Ataxia Investigators meeting – CANCELLED”

Posted on March 7, 2020June 5, 2024Categories Past Events, Past Events 2020

2-3 March 2020 | ARCA Global Conference – CANCELLED

2-3 March 2020 | ARCA Global Conference – CANCELLED

Continue reading “2-3 March 2020 | ARCA Global Conference – CANCELLED”

Posted on March 3, 2020June 5, 2024Categories Past Events, Past Events 2020

3 March 2020 | ERN-RND webinar “ultrasound diagnostics for cervical dystonia”

3 March 2020 | ERN-RND webinar “ultrasound diagnostics for cervical dystonia”

Continue reading “3 March 2020 | ERN-RND webinar “ultrasound diagnostics for cervical dystonia””

Posted on March 3, 2020June 5, 2024Categories Past Events, Past Events 2020

SCA Global Conference 2020 CANCELLED

SCA Global Conference 2020 CANCELLED

Continue reading “SCA Global Conference 2020 CANCELLED”

Posted on March 3, 2020August 13, 2024Categories News 2020

New EHA video on ERN-RND

New EHA video on ERN-RND

Continue reading “New EHA video on ERN-RND”

Posted on March 2, 2020August 13, 2024Categories News 2020

ARCA Global Conference 2020 CANCELLED

ARCA Global Conference 2020 CANCELLED

Continue reading “ARCA Global Conference 2020 CANCELLED”

Posted on March 2, 2020August 13, 2024Categories News 2020

ERN-RND Patient advocates meeting report, 30 January 2020

ERN-RND Patient advocates meeting report, 30 January 2020

Continue reading “ERN-RND Patient advocates meeting report, 30 January 2020”

Posted on March 2, 2020August 13, 2024Categories News 2020

29 February 2020 | Rare Disease Day 2020

29 February 2020 | Rare Disease Day 2020

Continue reading “29 February 2020 | Rare Disease Day 2020”

Posted on February 29, 2020June 5, 2024Categories Past Events, Past Events 2020

29 February 2020 | Süddeutscher Fachtag der Seltenen Erkrankungen

29 February 2020 | Süddeutscher Fachtag der Seltenen Erkrankungen

Continue reading “29 February 2020 | Süddeutscher Fachtag der Seltenen Erkrankungen”

Posted on February 29, 2020June 5, 2024Categories Past Events, Past Events 2020

28 February 2020 | Tag der Seltenen Erkrankungen in Mainz

28 February 2020 | Tag der Seltenen Erkrankungen in Mainz

Continue reading “28 February 2020 | Tag der Seltenen Erkrankungen in Mainz”

Posted on February 28, 2020June 5, 2024Categories Past Events, Past Events 2020

ERN-RND Survey: “Research Priorities” for patients

ERN-RND Survey: “Research Priorities” for patients

Continue reading “ERN-RND Survey: “Research Priorities” for patients”

Posted on February 26, 2020August 13, 2024Categories News 2020

Posts pagination

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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

145 Followers 84 Following 121 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 3 hours

    #WorldBrainDay is coming up on July 22! We asked our network: "If you could change one thing in the health care system for Rare Neurological Diseases what would that be and why?"

    This is what our patient representative Mary Kearney (Friedreich's #Ataxia) said.

    #WorldBrainDay2025 #WorldBrainDay25
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 6 days

    Bye bye #EAN2025: meeting members and partners, introducing pur new postgraduate curriculum (hosted on eanCampus), talking about future projects, planning new cooperations - we had a great time in Helsinki and are looking forward to the #EAN2026 In Geneva! #EAN2026
  • Get to this post

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

    EAN2025 - #PublicBrainHealthDay #BrainHealthMission

    I"f you could change ONE THING in the health care system for rare neurological diseases - what do you think is needed most and why?"

    This is what our coordinator Holm Graessner would change first:

    #ToBeContinued - more to come soon! #ToBeContinued
  • Get to this post

    Parkinson's Europe @parkinsonseurope.bsky.social 1 week

    We're loving #EAN2025! Come to our booth in the Neurohood area - N18 - and say hello, and pick up some Parkinson's Passports (in six languages!). ❤️ 🌷

    #Parkinsons #Parkinson ‪@ean.org‬
  • Get to this post

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

    #EAN2025 Come and learn more about our new online medical education programme - we are in the Neurohood, N21
  • Get to this post

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

    #Today: Learn more about ERNs and current practices on genetic therapies in Europe at 17.25 CEST in the Scientific Theatre - the talk will be held by Kleopas Kleopa and will include practices from ERN-RND and EURO-NMD European Reference Network for Rare Neuromuscular Diseases
  • Get to this post

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

    #EAN2025: Meet the ERNs at the the EAN Congress. Come and find us and EURO-NMD European Reference Network for Rare Neuromuscular Diseases at the booth N21 in the Neurohood!

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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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