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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

Survey: educational needs in rare neurological diseases in Europe

Survey: educational needs in rare neurological diseases in Europe

Continue reading “Survey: educational needs in rare neurological diseases in Europe”

Posted on March 19, 2021August 13, 2024Categories News 2021

FUNDING – EJP RD / ERN Research Mobility Fellowship call open

FUNDING – EJP RD / ERN Research Mobility Fellowship call open

Continue reading “FUNDING – EJP RD / ERN Research Mobility Fellowship call open”

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

EJP RD – ERN Research Mobility Fellowship funding opportunity

EJP RD – ERN Research Mobility Fellowship funding opportunity

Continue reading “EJP RD – ERN Research Mobility Fellowship funding opportunity”

Posted on March 10, 2021August 13, 2024Categories News 2021

ERICA project kick-off

ERICA project kick-off

Continue reading “ERICA project kick-off”

Posted on March 9, 2021August 13, 2024Categories News 2021

EJP RD Rare Disease Day Video

EJP RD Rare Disease Day Video

Continue reading “EJP RD Rare Disease Day Video”

Posted on March 9, 2021August 13, 2024Categories News 2021

Health Awareness Rare Disease Day 2021 campaign

Health Awareness Rare Disease Day 2021 campaign

Continue reading “Health Awareness Rare Disease Day 2021 campaign”

Posted on March 3, 2021August 13, 2024Categories News 2021

New leaflet for patients on Muscle tightness & stiffness – “spasticity” in ataxia

New leaflet for patients on Muscle tightness & stiffness – “spasticity” in ataxia

Continue reading “New leaflet for patients on Muscle tightness & stiffness – “spasticity” in ataxia”

Posted on February 26, 2021August 13, 2024Categories News 2021

ERN-RND recorded webinar: “Improving care for rare disease patients in Europe – Rare Disease Day 2021”

ERN-RND recorded webinar: “Improving care for rare disease patients in Europe – Rare Disease Day 2021”

Continue reading “ERN-RND recorded webinar: “Improving care for rare disease patients in Europe – Rare Disease Day 2021””

Posted on February 25, 2021August 13, 2024Categories News 2021

“Der Weg zur europaweiten Zusammenarbeit” von Holm Graessner

“Der Weg zur europaweiten Zusammenarbeit” von Holm Graessner

Continue reading ““Der Weg zur europaweiten Zusammenarbeit” von Holm Graessner”

Posted on February 25, 2021August 13, 2024Categories News 2021

ERN-RND recorded webinar: “Rare Disease Natural History Studies: Experience from the GNAO1 Natural History study in a pre and postpandemic world”

ERN-RND recorded webinar: “Rare Disease Natural History Studies: Experience from the GNAO1 Natural History study in a pre and postpandemic world”

Continue reading “ERN-RND recorded webinar: “Rare Disease Natural History Studies: Experience from the GNAO1 Natural History study in a pre and postpandemic world””

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

ERN-RND recorded webinar: “Progressive Supranuclear Palsy – Update on Diagnostics, Biomarkers and Therapies”

ERN-RND recorded webinar: “Progressive Supranuclear Palsy – Update on Diagnostics, Biomarkers and Therapies”

Continue reading “ERN-RND recorded webinar: “Progressive Supranuclear Palsy – Update on Diagnostics, Biomarkers and Therapies””

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

Research article: “Novel instructionless eye tracking tasks identify emotion recognition deficits in frontotemporal dementia” 

Research article: “Novel instructionless eye tracking tasks identify emotion recognition deficits in frontotemporal dementia” 

Continue reading “Research article: “Novel instructionless eye tracking tasks identify emotion recognition deficits in frontotemporal dementia” “

Posted on February 10, 2021August 13, 2024Categories News 2021

Case report: “Video Case Report: Action Myoclonus After CAR-T Cell Therapy”

Case report: “Video Case Report: Action Myoclonus After CAR-T Cell Therapy”

Continue reading “Case report: “Video Case Report: Action Myoclonus After CAR-T Cell Therapy””

Posted on February 9, 2021August 13, 2024Categories News 2021

Rare Disease Day 2021 video

Rare Disease Day 2021 video

Continue reading “Rare Disease Day 2021 video”

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

New ERN-RND project manager

New ERN-RND project manager

Continue reading “New ERN-RND project manager”

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

New ERN-RND CPMS helpdesk

Continue reading “New ERN-RND CPMS helpdesk”

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

Brief report: “Development of SARAhome, a New Video‐Based Tool for the Assessment of Ataxia at Home”

Brief report: “Development of SARAhome, a New Video‐Based Tool for the Assessment of Ataxia at Home”

Continue reading “Brief report: “Development of SARAhome, a New Video‐Based Tool for the Assessment of Ataxia at Home””

Posted on February 5, 2021August 13, 2024Categories News 2021

ERN-RND February 2021 Newsletter

ERN-RND February 2021 Newsletter

Continue reading “ERN-RND February 2021 Newsletter”

Posted on February 5, 2021August 13, 2024Categories News 2021

EJP RD research training workshop – call open

EJP RD research training workshop – call open

Continue reading “EJP RD research training workshop – call open”

Posted on January 28, 2021August 13, 2024Categories News 2021

EURORDIS Leadership School – applications open

EURORDIS Leadership School – applications open

Continue reading “EURORDIS Leadership School – applications open”

Posted on January 28, 2021August 13, 2024Categories News 2021

Review article: “The European Reference Network for Rare Neurological Diseases”

Review article: “The European Reference Network for Rare Neurological Diseases”

Continue reading “Review article: “The European Reference Network for Rare Neurological Diseases””

Posted on January 15, 2021August 13, 2024Categories News 2021

Research article: “Lower urinary tract and bowel dysfunction in spinocerebellar ataxias”

Research article: “Lower urinary tract and bowel dysfunction in spinocerebellar ataxias”

Continue reading “Research article: “Lower urinary tract and bowel dysfunction in spinocerebellar ataxias””

Posted on January 15, 2021August 13, 2024Categories News 2021

Virtual Meeting on How to Improve Access to Care for Huntington Families – recording available

Virtual Meeting on How to Improve Access to Care for Huntington Families – recording available

Continue reading “Virtual Meeting on How to Improve Access to Care for Huntington Families – recording available”

Posted on December 17, 2020August 13, 2024Categories News 2020

Review article: “Hypomyelinating leukodystrophies — unravelling myelin biology”

Review article: “Hypomyelinating leukodystrophies — unravelling myelin biology”

Continue reading “Review article: “Hypomyelinating leukodystrophies — unravelling myelin biology””

Posted on December 17, 2020August 13, 2024Categories News 2020

Research article: “Endocrine and Growth Abnormalities in 4H Leukodystrophy Caused by Variants in POLR3A, POLR3B, and POLR1C”

Research article: “Endocrine and Growth Abnormalities in 4H Leukodystrophy Caused by Variants in POLR3A, POLR3B, and POLR1C”

Continue reading “Research article: “Endocrine and Growth Abnormalities in 4H Leukodystrophy Caused by Variants in POLR3A, POLR3B, and POLR1C””

Posted on December 17, 2020August 13, 2024Categories News 2020

Registration and abstract submission for the EAN Congress 2021 are open

Registration and abstract submission for the EAN Congress 2021 are open

Continue reading “Registration and abstract submission for the EAN Congress 2021 are open”

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

Research article: “Apathy in presymptomatic genetic frontotemporal dementia predicts cognitive decline and is driven by structural brain changes”

Research article: “Apathy in presymptomatic genetic frontotemporal dementia predicts cognitive decline and is driven by structural brain changes”

Continue reading “Research article: “Apathy in presymptomatic genetic frontotemporal dementia predicts cognitive decline and is driven by structural brain changes””

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

No deal Brexit could have detrimental impact for four million people in UK living with a rare disease

No deal Brexit could have detrimental impact for four million people in UK living with a rare disease

Continue reading “No deal Brexit could have detrimental impact for four million people in UK living with a rare disease”

Posted on December 14, 2020August 13, 2024Categories News 2020

ERN-RND December 2020 Newsletter

ERN-RND December 2020 Newsletter

Continue reading “ERN-RND December 2020 Newsletter”

Posted on December 11, 2020August 13, 2024Categories News 2020

EURORDIS Black Pearl Awards 2021 – Submit your photo

EURORDIS Black Pearl Awards 2021 – Submit your photo

Continue reading “EURORDIS Black Pearl Awards 2021 – Submit your photo”

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

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Webinar Schedule

Latest News

  • ePAG visit at Children’s Hospital Sant Joan de Déu, Barcelona

    July 7, 2025
    Having a rare disease means spending a lot of time around doctors and hospitals. Places, that even adults will not …read more »
  • 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 »

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ERN-RND

@ern-rnd.bsky.social

149 Followers 84 Following 128 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/

  • Get to this post

    ERN-RND @ern-rnd.bsky.social 23 hours

    #WorldBrainDay is coming up on July 22! "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?" This is what we asked our network.

    This is what our ERN-RND clinician Yury Seliverstov would change: youtu.be/fLyijvhkwpU
  • Get to this post

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

    Whether neurologist, patient, patient advocate or carer - if you are specialized in or affected by #RareNeurologicalDiseases and movement disorders, then you shouldn't miss our monthly newsletter with lots of news, disease knowledge, publications, webinars and events: tinyurl.com/383u46cz
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 3 days

    #WorldBrainDay in coming up on July 22 - how can we improve the health care system for rare neurological diseases? We asked our network what they would choose if they could chnge only one thing. This is what Iva Galovic from our partner org. #WorldBrainDay would choose:

    www.youtube.com/watch?v=vAlr...
  • Get to this post

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

    July 22 is #WorldBrainDay - we asked our network what they would change in the healthcare system for RND if they could change only one thing in order to improve it.
    This is what our ERN-RND clinician Kleopas Kleopa would focus on:
  • Get to this post

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

    #WorldBrainDayJuly22: If you could change 1 thing in the health care system for #RareNeurologicalDiseases to improve something, what would you choose and why?

    This is what our ERN-RND member Mika Martikainen would prioritize:

    youtu.be/WOqs5kEdNPw

    #WorldBrainDay2025 #WorldBrainDay25 #BrainHealth
  • Get to this post

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

    #FriedreichAtaxia (FA) is progressive, meaning what you can do keeps changing. When you think you have gotten to understand FA, something new happens - says Brona Kearney, who has been living with FA for the past 23 years.
    How does this disease affect a patient's life? This is Brona's story.
  • Get to this post

    ERN EuroBloodNet @erneurobloodnet.bsky.social 2 weeks

    💻​Don't miss the ERN-EuroBloodNet #ThursdayWebinar session on "Gene therapy for Pyruvate Kinase Deficiency and Congenital Dyserythropoietic Anemia Type II”!

    🗓️3rd July - 17:00h CEST.
    👉Registrations: eurobloodnet.eu/education/th...

    #ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #hematology

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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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