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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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Category: News

Publication: “Acute-onset paralytic strabismus in toddlers is important to consider as a potential early sign of late-infantile Metachromatic Leukodystrophy”

Publication: “Acute-onset paralytic strabismus in toddlers is important to consider as a potential early sign of late-infantile Metachromatic Leukodystrophy”

Continue reading “Publication: “Acute-onset paralytic strabismus in toddlers is important to consider as a potential early sign of late-infantile Metachromatic Leukodystrophy””

Author ERN-RNDPosted on March 1, 2022February 16, 2022Categories News

Publication from the European Metachromatic Leukodystrophy initiative (MLDi)

Publication from the European Metachromatic Leukodystrophy initiative (MLDi)

Continue reading “Publication from the European Metachromatic Leukodystrophy initiative (MLDi)”

Author ERN-RNDPosted on February 16, 2022Categories News

Publication: “Therapy Trial Design in Vanishing White Matter – An Expert Consortium Opinion”

Publication: “Therapy Trial Design in Vanishing White Matter – An Expert Consortium Opinion”

Continue reading “Publication: “Therapy Trial Design in Vanishing White Matter – An Expert Consortium Opinion””

Author ERN-RNDPosted on February 9, 2022February 9, 2022Categories News

United Nations adopts Resolution on persons with rare diseases

United Nations adopts Resolution on persons with rare diseases

Continue reading “United Nations adopts Resolution on persons with rare diseases”

Author ERN-RNDPosted on January 10, 2022January 10, 2022Categories News

33 new ERN-RND members!

33 new ERN-RND members!

Continue reading “33 new ERN-RND members!”

Author ERN-RNDPosted on December 20, 2021December 20, 2021Categories News

EURORDIS Photo Award

EURORDIS Photo Award

Continue reading “EURORDIS Photo Award”

Author ERN-RNDPosted on November 10, 2021November 3, 2021Categories News

New CPMS helpdesk

New CPMS helpdesk

Continue reading “New CPMS helpdesk”

Author ERN-RNDPosted on November 3, 2021November 3, 2021Categories News

Editorial: Networks in Movement Disorders. To Move or Not to Move

Editorial: Networks in Movement Disorders. To Move or Not to Move

Continue reading “Editorial: Networks in Movement Disorders. To Move or Not to Move”

Author ERN-RNDPosted on October 26, 2021Categories News

Publication: “Preparing n-of-1 Antisense Oligonucleotide Treatments for Rare Neurological Diseases in Europe: Genetic, Regulatory, and Ethical Perspectives”

Publication: “Preparing n-of-1 Antisense Oligonucleotide Treatments for Rare Neurological Diseases in Europe: Genetic, Regulatory, and Ethical Perspectives”

Continue reading “Publication: “Preparing n-of-1 Antisense Oligonucleotide Treatments for Rare Neurological Diseases in Europe: Genetic, Regulatory, and Ethical Perspectives””

Author ERN-RNDPosted on October 21, 2021October 21, 2021Categories News

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”

Author ERN-RNDPosted on October 4, 2021September 17, 2021Categories News

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””

Author ERN-RNDPosted on September 8, 2021Categories News

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”

Author ERN-RNDPosted on September 8, 2021Categories News

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””

Author ERN-RNDPosted on August 24, 2021Categories News

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””

Author ERN-RNDPosted on August 24, 2021Categories News

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””

Author ERN-RNDPosted on August 24, 2021Categories News

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”

Author ERN-RNDPosted on August 23, 2021August 23, 2021Categories News

EURORDIS Black Pearl Awards – nominations open

EURORDIS Black Pearl Awards – nominations open

Continue reading “EURORDIS Black Pearl Awards – nominations open”

Author ERN-RNDPosted on July 7, 2021July 7, 2021Categories News

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”

Author ERN-RNDPosted on June 29, 2021Categories News

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!”

Author ERN-RNDPosted on June 24, 2021Categories News

“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”

Author ERN-RNDPosted on June 22, 2021Categories News

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”

Author ERN-RNDPosted on June 22, 2021Categories News

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”

Author ERN-RNDPosted on June 16, 2021Categories News

The Value of Treatment for Brain Disorders: Case Studies on Rare Diseases & Mental Disorders present findings at  Synthesis Meeting

The Value of Treatment for Brain Disorders: Case Studies on Rare Diseases & Mental Disorders present findings at  Synthesis Meeting

Continue reading “The Value of Treatment for Brain Disorders: Case Studies on Rare Diseases & Mental Disorders present findings at  Synthesis Meeting”

Author ERN-RNDPosted on June 8, 2021Categories News

ERN-RND webinar on “MRI pattern recognition in leukodystrophies” – MRI upload by participants

ERN-RND webinar on “MRI pattern recognition in leukodystrophies” – MRI upload by participants

Continue reading “ERN-RND webinar on “MRI pattern recognition in leukodystrophies” – MRI upload by participants”

Author ERN-RNDPosted on June 7, 2021June 7, 2021Categories News

CPMS tutorial video for ERN-RND clinicians now available

CPMS tutorial video for ERN-RND clinicians now available

Continue reading “CPMS tutorial video for ERN-RND clinicians now available”

Author ERN-RNDPosted on May 28, 2021Categories News

Research article: “Regional Brain and Spinal Cord Volume Loss in Spinocerebellar Ataxia Type 3”

Research article: “Regional Brain and Spinal Cord Volume Loss in Spinocerebellar Ataxia Type 3”

Continue reading “Research article: “Regional Brain and Spinal Cord Volume Loss in Spinocerebellar Ataxia Type 3””

Author ERN-RNDPosted on May 28, 2021Categories News

OneNeurology Global Advocacy Workshop 2021

OneNeurology Global Advocacy Workshop 2021

Continue reading “OneNeurology Global Advocacy Workshop 2021”

Author ERN-RNDPosted on May 28, 2021May 28, 2021Categories News

EJP RD Workshop: Clinical Research with databases: The Basics & Beyond Workshop in clinical epidemiological research for ERNs

EJP RD Workshop: Clinical Research with databases: The Basics & Beyond Workshop in clinical epidemiological research for ERNs

Continue reading “EJP RD Workshop: Clinical Research with databases: The Basics & Beyond Workshop in clinical epidemiological research for ERNs”

Author ERN-RNDPosted on May 28, 2021May 28, 2021Categories News

Research article: “A de novo STUB1 variant associated with an early adult‑onset multisystemic ataxia phenotype”

Research article: “A de novo STUB1 variant associated with an early adult‑onset multisystemic ataxia phenotype”

Continue reading “Research article: “A de novo STUB1 variant associated with an early adult‑onset multisystemic ataxia phenotype””

Author ERN-RNDPosted on April 29, 2021Categories News

ERN-RND webinar “MR Biomarkers in Spinocerebellar Ataxias” – recording available

ERN-RND  webinar “MR Biomarkers in Spinocerebellar Ataxias” – recording available

Continue reading “ERN-RND webinar “MR Biomarkers in Spinocerebellar Ataxias” – recording available”

Author ERN-RNDPosted on April 27, 2021Categories News

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Webinar Schedule

Latest News

  • Publication: “Acute-onset paralytic strabismus in toddlers is important to consider as a potential early sign of late-infantile Metachromatic Leukodystrophy”

    March 1, 2022
    read more »
  • Publication from the European Metachromatic Leukodystrophy initiative (MLDi)

    February 16, 2022
    read more »
  • Publication: “Therapy Trial Design in Vanishing White Matter – An Expert Consortium Opinion”

    February 9, 2022
    read more »

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ERN-RND European Reference Network for Rare Neurological Diseases

Latest Events

  • 25 – 28 June 2022 | 8th Congress of the European Academy of Neurology – Europe 2022

    June 29, 2022
    read more »
  • 27 June – 1 July 2022 | 11th European Conference on Rare Diseases & Orphan Products

    July 2, 2022
    read more »
  • 3 – 7 July 2022 | ISPRM/ESPRM/SPMFR

    July 8, 2022
    read more »

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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