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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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Author: ERN-RND

9 November 2021 | ERN-RND webinar “Clinical Outcome Assessments in Ataxias”

9 November 2021 | ERN-RND webinar “Clinical Outcome Assessments in Ataxias”

Continue reading “9 November 2021 | ERN-RND webinar “Clinical Outcome Assessments in Ataxias””

Posted on October 10, 2021June 5, 2024Categories Past Events, Past Events 2021

12 October 2021 | ERN-RND webinar “Functional gait disorders: a sign-based approach”

12 October 2021 | ERN-RND webinar “Functional gait disorders: a sign-based approach”

Continue reading “12 October 2021 | ERN-RND webinar “Functional gait disorders: a sign-based approach””

Posted on October 10, 2021June 5, 2024Categories Past Events, Past Events 2021

19 October 2021 | ERN-RND webinar “Oligonucleotide therapies: a new class of drugs that allow precise genetic targeting”

19 October 2021 | ERN-RND webinar “Oligonucleotide therapies: a new class of drugs that allow precise genetic targeting”

Continue reading “19 October 2021 | ERN-RND webinar “Oligonucleotide therapies: a new class of drugs that allow precise genetic targeting””

Posted on October 10, 2021June 5, 2024Categories Past Events, Past Events 2021

26 October 2021 | ERN-RND webinar “Pelizaeus-Merzbacher disease and related disorders”

26 October 2021 | ERN-RND webinar “Pelizaeus-Merzbacher disease and related disorders”

Continue reading “26 October 2021 | ERN-RND webinar “Pelizaeus-Merzbacher disease and related disorders””

Posted on October 10, 2021June 5, 2024Categories Past Events, Past Events 2021

18 November 2021 | ERN-RND webinar “Pure autonomic failure: really that pure?”

18 November 2021 | ERN-RND webinar “Pure autonomic failure: really that pure?”

Continue reading “18 November 2021 | ERN-RND webinar “Pure autonomic failure: really that pure?””

Posted on October 10, 2021June 5, 2024Categories Past Events, Past Events 2021

7 October 2021 | ERN-RND webinar “x-linked adrenoleukodystrophies-Update”

7 October 2021 | ERN-RND webinar “x-linked adrenoleukodystrophies-Update”

Continue reading “7 October 2021 | ERN-RND webinar “x-linked adrenoleukodystrophies-Update””

Posted on October 7, 2021June 5, 2024Categories Past Events, Past Events 2021

3-7 October 2021 | XXV World Congress of Neurology

3-7 October 2021 | XXV World Congress of Neurology

Continue reading “3-7 October 2021 | XXV World Congress of Neurology”

Posted on October 7, 2021June 5, 2024Categories Past Events, Past Events 2021

Available from EJP RD: MOOC Diagnosing Rare Diseases: from the Clinic to Research and back

Available from EJP RD:  MOOC Diagnosing Rare Diseases: from the Clinic to Research and back

Continue reading “Available from EJP RD: MOOC Diagnosing Rare Diseases: from the Clinic to Research and back”

Posted on October 4, 2021August 13, 2024Categories News 2021

September 2021 | Dystonia Awareness Month

Continue reading “September 2021 | Dystonia Awareness Month”

Posted on September 30, 2021June 5, 2024Categories Past Events, Past Events 2021

28 September 2021 | ERN-RND webinar “Treatable dystonias & dystonia in inborn errors of metabolism”

28 September 2021 | ERN-RND webinar “Treatable dystonias & dystonia in inborn errors of metabolism”

Continue reading “28 September 2021 | ERN-RND webinar “Treatable dystonias & dystonia in inborn errors of metabolism””

Posted on September 28, 2021June 5, 2024Categories Past Events, Past Events 2021

17-22 September 2021 | MDS Virtual Congress 2021

17-22 September 2021 | MDS Virtual Congress 2021

Continue reading “17-22 September 2021 | MDS Virtual Congress 2021”

Posted on September 22, 2021June 5, 2024Categories Past Events, Past Events 2021

14 September 2021 | ERN-RND webinar “Genetic forms of Parkinson’s disease”

14 September 2021 | ERN-RND webinar “Genetic forms of Parkinson’s disease”

Continue reading “14 September 2021 | ERN-RND webinar “Genetic forms of Parkinson’s disease””

Posted on September 14, 2021June 5, 2024Categories Past Events, Past Events 2021

9-11 September 2021 | EHDN plenary meeting

9-11 September 2021 | EHDN plenary meeting

Continue reading “9-11 September 2021 | EHDN plenary meeting”

Posted on September 11, 2021June 5, 2024Categories Past Events, Past Events 2021

New EJP RD training: “Pluripotent stem cells for rare disease research: banking, data, application”

New EJP RD training: “Pluripotent stem cells for rare disease research: banking, data, application”

Continue reading “New EJP RD training: “Pluripotent stem cells for rare disease research: banking, data, application””

Posted on September 8, 2021August 13, 2024Categories News 2021

Launch of the ERN Research Training Workshops funding opportunity

Launch of the ERN Research Training Workshops funding opportunity

Continue reading “Launch of the ERN Research Training Workshops funding opportunity”

Posted on September 8, 2021August 13, 2024Categories News 2021

4 September 2021 | Dystonia Europe Annual Conference – Dystonia Day

4 September 2021 | Dystonia Europe Annual Conference – Dystonia Day

Continue reading “4 September 2021 | Dystonia Europe Annual Conference – Dystonia Day”

Posted on September 4, 2021June 5, 2024Categories Past Events, Past Events 2021

Review article: “Evolving concepts in progressive supranuclear palsy and other 4-repeat tauopathies”

Review article: “Evolving concepts in progressive supranuclear palsy and other 4-repeat tauopathies”

Continue reading “Review article: “Evolving concepts in progressive supranuclear palsy and other 4-repeat tauopathies””

Posted on August 24, 2021August 13, 2024Categories News 2021

Research article: “Biallelic PI4KA variants cause neurological, intestinal and immunological disease”

Research article: “Biallelic PI4KA variants cause neurological, intestinal and immunological disease”

Continue reading “Research article: “Biallelic PI4KA variants cause neurological, intestinal and immunological disease””

Posted on August 24, 2021August 13, 2024Categories News 2021

Research article: “Neurofilament light chain and glial fibrillary acidic protein levels in metachromatic leukodystrophy”

Research article: “Neurofilament light chain and glial fibrillary acidic protein levels in metachromatic leukodystrophy”

Continue reading “Research article: “Neurofilament light chain and glial fibrillary acidic protein levels in metachromatic leukodystrophy””

Posted on August 24, 2021August 13, 2024Categories News 2021

New interview available – meet Nicole Wolf from Emma Children’s Hospital/Amsterdam University Medical Centers, the Netherlands

New interview available – meet Nicole Wolf from Emma Children’s Hospital/Amsterdam University Medical Centers, the Netherlands

Continue reading “New interview available – meet Nicole Wolf from Emma Children’s Hospital/Amsterdam University Medical Centers, the Netherlands”

Posted on August 23, 2021August 13, 2024Categories News 2021

EURORDIS Black Pearl Awards – nominations open

EURORDIS Black Pearl Awards – nominations open

Continue reading “EURORDIS Black Pearl Awards – nominations open”

Posted on July 7, 2021August 13, 2024Categories News 2021

6 July 2021 | ERN-RND webinar “Speech as a biomarker in ataxia: What can it tell us and how should we use it?”

6 July 2021 | ERN-RND webinar “Speech as a biomarker in ataxia: What can it tell us and how should we use it?”

Continue reading “6 July 2021 | ERN-RND webinar “Speech as a biomarker in ataxia: What can it tell us and how should we use it?””

Posted on July 6, 2021June 5, 2024Categories Past Events, Past Events 2021

30 June – 2 July 2021 | ERN-RND Annual Meeting

30 June – 2 July 2021 | ERN-RND Annual Meeting
Continue reading “30 June – 2 July 2021 | ERN-RND Annual Meeting”
Posted on July 1, 2021June 5, 2024Categories Past Events, Past Events 2021

Solve-RD experts team up to share and analyse data from unsolved rare disease patients

Solve-RD experts team up to share and analyse data from unsolved rare disease patients

Continue reading “Solve-RD experts team up to share and analyse data from unsolved rare disease patients”

Posted on June 29, 2021August 13, 2024Categories News 2021

Share your reason for Europe to take action on rare diseases!

Share your reason for Europe to take action on rare diseases!

Continue reading “Share your reason for Europe to take action on rare diseases!”

Posted on June 24, 2021August 13, 2024Categories News 2021

19-22 June 2021 | EAN Congress 2021

19-22 June 2021 | EAN Congress 2021

Continue reading “19-22 June 2021 | EAN Congress 2021”

Posted on June 22, 2021June 5, 2024Categories Past Events, Past Events 2021

“Quality assurance, variant interpretation and data management in the NGS diagnostics era” training

“Quality assurance, variant interpretation and data management in the NGS diagnostics era” training

Continue reading ““Quality assurance, variant interpretation and data management in the NGS diagnostics era” training”

Posted on June 22, 2021August 13, 2024Categories News 2021

International Summer School on Rare Disease Registries and FAIRification of Data

International Summer School on Rare Disease Registries and FAIRification of Data

Continue reading “International Summer School on Rare Disease Registries and FAIRification of Data”

Posted on June 22, 2021August 13, 2024Categories News 2021

A first trial of Guanabenz in Vanishing White Matter

A first trial of Guanabenz in Vanishing White Matter

Continue reading “A first trial of Guanabenz in Vanishing White Matter”

Posted on June 16, 2021August 13, 2024Categories News 2021

15 June 2021 | ERN-RND webinar “Update Metachromatic Leukodystrophy”

15 June 2021 | ERN-RND webinar “Update Metachromatic Leukodystrophy”

Continue reading “15 June 2021 | ERN-RND webinar “Update Metachromatic Leukodystrophy””

Posted on June 15, 2021June 5, 2024Categories Past Events, Past Events 2021

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Webinar Schedule

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ERN-RND

@ern-rnd.bsky.social

189 Followers 92 Following 272 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/

Last updated 10 minutes ago

  • View post by ERN-RND on Bluesky

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

    Rare disease registries are essential for advancing research and clinical trials, particularly in rare neurological diseases (RND). Join our free online scientific symposium on Registries for RND on October 10 and register: us02web.zoom.us/webinar/regi...
    Programme: tinyurl.com/4ptsk8pu
  • View post by ERN-RND on Bluesky

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

    On October 10 we will focus on "Registries for RND" in our Scientific +Symposium. Do you want to join us online (and free of charge)? Then register here now: us02web.zoom.us/webinar/regi...

    Programme: www.ern-rnd.eu/wp-content/u...

    #RND #RareNeurologicalDisease #registry #neurology #RareNeurology
  • View post by ERN-RND on Bluesky

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

    ERN-RND Annual Meeting 2026 - Registration open

    on 10-11 October 2024 in Ljubljana,...
  • View post by ERN-RND on Bluesky

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

    Learn more about registries in Rare Neurological Diseases in our Scientific #Symposium on October 10 - online and free of charge!

    For programme and registration click here: www.ern-rnd.eu/wp-content/u...

    #registry #RND #RareNeurologicalDisease
  • View post by ERN-RND on Bluesky

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

    Stay informed on the latest developments in rare neurological diseases by subscribing to our #newsletter: www.ern-rnd.eu/mailpoet-ema...
    With updates on standards of care, clinical decision support tools, educational webinars, opportunities to participate in research and initiatives, events.
  • View post by ERN-RND on Bluesky

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

    Interested in Registries for Rare Neurological Diseases? Then join our Scientific #Symposium on October 10 - online and free of charge!

    To see the programme and to register click here: www.ern-rnd.eu/wp-content/u...

    #registry #RND #RareNeurologicalDisease #RareNeurology #ERNs
    🔄 1
  • View post by ERN-RND on Bluesky

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

    Become an expert in Ataxias and HSPs with our UEMS certified postgraduate curriculum in the competency "Rare Neurological Diseases." Hosted at eanCampus

    Interested? Visit our website for more information: lnkd.in/eKdY5jpf

    #Ataxia #HSP #webinar #RND
    🔄 1
Last updated 10 minutes ago

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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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