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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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Author: ERN-RND

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

22 February 2020 | Rare diseases and European Reference Networks

22 February 2020 | Rare diseases and European Reference Networks

Continue reading “22 February 2020 | Rare diseases and European Reference Networks”

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

20 February 2020: EURO-NMD webinar “mitochondrial donation”

20 February 2020: EURO-NMD webinar “mitochondrial donation”

Continue reading “20 February 2020: EURO-NMD webinar “mitochondrial donation””

Posted on February 20, 2020June 5, 2024Categories Past Events, Past Events 2020

18 February 2020 | ERN-RND webinar “mitochondrial disorder with chorea”

18 February 2020 | ERN-RND webinar “mitochondrial disorder with chorea”

Continue reading “18 February 2020 | ERN-RND webinar “mitochondrial disorder with chorea””

Posted on February 18, 2020June 5, 2024Categories Past Events, Past Events 2020

EJP RD calls for funding – ERNs only

EJP RD calls for funding – ERNs only

Continue reading “EJP RD calls for funding – ERNs only”

Posted on February 5, 2020August 13, 2024Categories News 2020

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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

129 Followers 80 Following 94 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

    Der Code des Lebens @dercodedeslebens.bsky.social 3 days

    📣 Neue Folge: Von Basenpaaren und Bytes
    Das menschliche Genom hat 3 Milliarden Basenpaare – eine riesige Datenflut, die nur mit Bioinformatik zu bewältigen ist. Camill Kaipf erklärt, wie man in dieses Feld kommt und warum eine sichere IT-Infrastruktur so wichtig ist.
    🎧 t1p.de/xebt4
  • Get to this post

    The German Human Genome-Phenome Archive @ghga.bsky.social 1 week

    🎬 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...
  • Get to this post

    ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social 2 weeks

    Erksplain - Kidney Transplantation 🚨

    Kidney transplants save lives — but the average wait is 6–8 years.
    Deceased donors are matched by urgency and compatibility.
    Most people can donate — just register or tell your family! 💡

    Organ donation = a true gift of life. 🌍

    #KidneyTransplant #SaveLives
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 2 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
  • Get to this post

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

    💻 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

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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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