ERN-RND – Page 5 – ERN-RND | European Reference Network on Rare Neurological Diseases

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””

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

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

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””

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”

EURORDIS Black Pearl Awards – nominations open

Continue reading “EURORDIS Black Pearl Awards – nominations open”

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?””

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

Continue reading “30 June – 2 July 2021 | ERN-RND Annual Meeting”

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”

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

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

19-22 June 2021 | EAN Congress 2021

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

“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”

International Summer School on Rare Disease Registries and FAIRification of Data

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

A first trial of Guanabenz in Vanishing White Matter

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

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

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

8 June 2021 | ERN-RND webinar “MRI pattern recognition in leukodystrophies”

Continue reading “8 June 2021 | ERN-RND webinar “MRI pattern recognition in leukodystrophies””

8 June 2021 | Value of Treatment 2 Synthesis Meeting

Continue reading “8 June 2021 | Value of Treatment 2 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”

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”

27-28 May 2021 | ERICA kick-off meeting & first General Assembly

Continue reading “27-28 May 2021 | ERICA kick-off meeting & first General Assembly”

CPMS tutorial video for ERN-RND clinicians now available

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

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””

OneNeurology Global Advocacy Workshop 2021

Continue reading “OneNeurology Global Advocacy Workshop 2021”

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”

18 May 2021 | ERN-RND webinar “Benign hereditary choreas” (paediatric focus)

Continue reading “18 May 2021 | ERN-RND webinar “Benign hereditary choreas” (paediatric focus)”

7 May 2021 | ERN-RND webinar “Presenting the new CPMS functionalities and the principle of e-consultations”

Continue reading “7 May 2021 | ERN-RND webinar “Presenting the new CPMS functionalities and the principle of e-consultations””

4 May 2021 | ERN-RND webinar “Better Conversations -Communication Partner Training for language led dementias”

Continue reading “4 May 2021 | ERN-RND webinar “Better Conversations -Communication Partner Training for language led dementias””

Author: ERN-RND

9-11 September 2021 | EHDN plenary meeting

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

Launch of the ERN Research Training Workshops funding opportunity

4 September 2021 | Dystonia Europe Annual Conference – Dystonia Day

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

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

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

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

EURORDIS Black Pearl Awards – nominations open

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

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

Continue reading “30 June – 2 July 2021 | ERN-RND Annual Meeting”

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

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

19-22 June 2021 | EAN Congress 2021

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

International Summer School on Rare Disease Registries and FAIRification of Data

A first trial of Guanabenz in Vanishing White Matter

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

8 June 2021 | ERN-RND webinar “MRI pattern recognition in leukodystrophies”

8 June 2021 | Value of Treatment 2 Synthesis Meeting

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

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

27-28 May 2021 | ERICA kick-off meeting & first General Assembly

CPMS tutorial video for ERN-RND clinicians now available

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

OneNeurology Global Advocacy Workshop 2021

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

18 May 2021 | ERN-RND webinar “Benign hereditary choreas” (paediatric focus)

7 May 2021 | ERN-RND webinar “Presenting the new CPMS functionalities and the principle of e-consultations”

4 May 2021 | ERN-RND webinar “Better Conversations -Communication Partner Training for language led dementias”