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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

7-10 0ctober 2020 | 11th World Congress of Neurorehabilitation

7-10 0ctober 2020 | 11th World Congress of Neurorehabilitation

Continue reading “7-10 0ctober 2020 | 11th World Congress of Neurorehabilitation”

Posted on October 10, 2020June 5, 2024Categories Past Events, Past Events 2020

Research article: “Video-tutorial for the Movement Disorder Society criteria for progressive supranuclear palsy”

Research article: “Video-tutorial for the Movement Disorder Society criteria for progressive supranuclear palsy”

Continue reading “Research article: “Video-tutorial for the Movement Disorder Society criteria for progressive supranuclear palsy””

Posted on October 7, 2020August 13, 2024Categories News 2020

6 October 2020 | ERN-RND webinar “Treatment of spasticity in HSP and leukodystrophies”

6 October 2020 | ERN-RND webinar “Treatment of spasticity in HSP and leukodystrophies”

Continue reading “6 October 2020 | ERN-RND webinar “Treatment of spasticity in HSP and leukodystrophies””

Posted on October 6, 2020June 5, 2024Categories Past Events, Past Events 2020

EJP RD open call for Research Mobility Fellowships

EJP RD open call for Research Mobility Fellowships

Continue reading “EJP RD open call for Research Mobility Fellowships”

Posted on October 2, 2020August 13, 2024Categories News 2020

Research article: “Cross-disease analysis of depression, ataxia and dystonia highlights a role for synaptic plasticity and the cerebellum in the pathophysiology of these comorbid diseases”

Research article: “Cross-disease analysis of depression, ataxia and dystonia highlights a role for synaptic plasticity and the cerebellum in the pathophysiology of these comorbid diseases”

Continue reading “Research article: “Cross-disease analysis of depression, ataxia and dystonia highlights a role for synaptic plasticity and the cerebellum in the pathophysiology of these comorbid diseases””

Posted on October 2, 2020August 13, 2024Categories News 2020

Research article: “Metachromatic leukodystrophy genotypes in The Netherlands reveal novel pathogenic ARSA variants in non-Caucasian patients”

Research article: “Metachromatic leukodystrophy genotypes in The Netherlands reveal novel pathogenic ARSA variants in non-Caucasian patients”

Continue reading “Research article: “Metachromatic leukodystrophy genotypes in The Netherlands reveal novel pathogenic ARSA variants in non-Caucasian patients””

Posted on October 2, 2020August 13, 2024Categories News 2020

September 2020 | Dystonia Awareness Month

September 2020 | Dystonia Awareness Month

Continue reading “September 2020 | Dystonia Awareness Month”

Posted on September 30, 2020June 5, 2024Categories Past Events, Past Events 2020

Research article: “Defining the clinical, molecular and imaging spectrum of adaptor protein complex 4-associated hereditary spastic paraplegia”

Research article: “Defining the clinical, molecular and imaging spectrum of adaptor protein complex 4-associated hereditary spastic paraplegia”

Continue reading “Research article: “Defining the clinical, molecular and imaging spectrum of adaptor protein complex 4-associated hereditary spastic paraplegia””

Posted on September 30, 2020August 13, 2024Categories News 2020

Research video: “Criss-cross gait A clue to glucose transporter type 1 deficiency syndrome”

Research video: “Criss-cross gait A clue to glucose transporter type 1 deficiency syndrome”

Continue reading “Research video: “Criss-cross gait A clue to glucose transporter type 1 deficiency syndrome””

Posted on September 30, 2020August 13, 2024Categories News 2020

29 September 2020 | ERN-RND webinar “How can we develop and implement evidence based rehabilitation in rare disorders?”

29 September 2020 | ERN-RND webinar “How can we develop and implement evidence based rehabilitation in rare disorders?”

Continue reading “29 September 2020 | ERN-RND webinar “How can we develop and implement evidence based rehabilitation in rare disorders?””

Posted on September 29, 2020June 5, 2024Categories Past Events, Past Events 2020

New ERN-RND registry coordinator

New ERN-RND registry coordinator

Continue reading “New ERN-RND registry coordinator”

Posted on September 29, 2020August 13, 2024Categories News 2020

25 September | International Ataxia Awareness Day (IAAW)

25 September | International Ataxia Awareness Day (IAAW)
Posted on September 25, 2020June 5, 2024Categories Past Events, Past Events 2020

EJP RD open call for Selection of Topics for Research Training Workshops

EJP RD open call for Selection of Topics for Research Training Workshops

Continue reading “EJP RD open call for Selection of Topics for Research Training Workshops”

Posted on September 18, 2020August 13, 2024Categories News 2020

17 September 2020 | EURO-NMD webinar “the basics of genetic approaches for NMDs – using DMD as a paradigm”

17 September 2020 | EURO-NMD webinar “the basics of genetic approaches for NMDs – using DMD as a paradigm”

Continue reading “17 September 2020 | EURO-NMD webinar “the basics of genetic approaches for NMDs – using DMD as a paradigm””

Posted on September 17, 2020June 5, 2024Categories Past Events, Past Events 2020

12-16 September 2020 | MDS Virtual Congress

12-16 September 2020 | MDS Virtual Congress

Continue reading “12-16 September 2020 | MDS Virtual Congress”

Posted on September 16, 2020June 5, 2024Categories Past Events, Past Events 2020

Research article: “Huntington’s disease alters human neurodevelopment”

Research article: “Huntington’s disease alters human neurodevelopment”

Continue reading “Research article: “Huntington’s disease alters human neurodevelopment””

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

Research article: “Cardiac phenotype in ATP1A3-related syndromes: A multicentre cohort study”

Research article: “Cardiac phenotype in ATP1A3-related syndromes: A multicentre cohort study”

Continue reading “Research article: “Cardiac phenotype in ATP1A3-related syndromes: A multicentre cohort study””

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

15 September 2020 | ERN-RND webinar “A challenge in neurogenetics: Huntington disease in kids”

15 September 2020 | ERN-RND webinar “A challenge in neurogenetics: Huntington disease in kids”

Continue reading “15 September 2020 | ERN-RND webinar “A challenge in neurogenetics: Huntington disease in kids””

Posted on September 15, 2020June 5, 2024Categories Past Events, Past Events 2020

11 September 2020 | EHDN’s Bridging Event 2020

11 September 2020 | EHDN’s Bridging Event 2020

Continue reading “11 September 2020 | EHDN’s Bridging Event 2020”

Posted on September 11, 2020June 5, 2024Categories Past Events, Past Events 2020

Research article: “Dystonia genes functionally converge in specific neurons and share neurobiology with psychiatric disorders”

Research article: “Dystonia genes functionally converge in specific neurons and share neurobiology with psychiatric disorders”

Continue reading “Research article: “Dystonia genes functionally converge in specific neurons and share neurobiology with psychiatric disorders””

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

10 September 2020 | ERN-RND webinar “How to assess and manage spastic gait in rare diseases?”

10 September 2020 | ERN-RND webinar “How to assess and manage spastic gait in rare diseases?”

Continue reading “10 September 2020 | ERN-RND webinar “How to assess and manage spastic gait in rare diseases?””

Posted on September 10, 2020June 5, 2024Categories Past Events, Past Events 2020

European Spinocerebellar Ataxia Type 3/Machado-Joseph Disease Initiative (ESMI) –lay summary of the results of this 4-year Consortium study

European Spinocerebellar Ataxia Type 3/Machado-Joseph Disease Initiative (ESMI) –lay summary of the results of this 4-year Consortium study

Continue reading “European Spinocerebellar Ataxia Type 3/Machado-Joseph Disease Initiative (ESMI) –lay summary of the results of this 4-year Consortium study”

Posted on September 10, 2020August 13, 2024Categories News 2020

8 September 2020 | ERN-RND webinar “Semantic variant of primary progressive aphasia”

8 September 2020 | ERN-RND webinar “Semantic variant of primary progressive aphasia”

Continue reading “8 September 2020 | ERN-RND webinar “Semantic variant of primary progressive aphasia””

Posted on September 8, 2020June 5, 2024Categories Past Events, Past Events 2020

8 September 2020 | 4th EAN Task Force for Rare Neurological Diseases Teaching Course

8 September 2020 | 4th EAN Task Force for Rare Neurological Diseases Teaching Course

Continue reading “8 September 2020 | 4th EAN Task Force for Rare Neurological Diseases Teaching Course”

Posted on September 8, 2020June 5, 2024Categories Past Events, Past Events 2020

ERN-RND September 2020 Newsletter

ERN-RND September 2020 Newsletter

Continue reading “ERN-RND September 2020 Newsletter”

Posted on September 3, 2020August 13, 2024Categories News 2020

1 December 2020 | ERN-RND webinar “Functional movement disorders: a diagnostic guide”

1 December 2020 | ERN-RND webinar “Functional movement disorders: a diagnostic guide”

Continue reading “1 December 2020 | ERN-RND webinar “Functional movement disorders: a diagnostic guide””

Posted on September 1, 2020June 5, 2024Categories Past Events, Past Events 2020

Research article: “Conversion of individuals at risk for spinocerebellar ataxia types 1, 2, 3, and 6 to manifest ataxia (RISCA): a longitudinal cohort study”

Research article: “Conversion of individuals at risk for spinocerebellar ataxia types 1, 2, 3, and 6 to manifest ataxia (RISCA): a longitudinal cohort study”

Continue reading “Research article: “Conversion of individuals at risk for spinocerebellar ataxia types 1, 2, 3, and 6 to manifest ataxia (RISCA): a longitudinal cohort study””

Posted on September 1, 2020August 13, 2024Categories News 2020

NEW ePAG patient advocate for Huntington’s disease from Bulgaria

NEW ePAG patient advocate for Huntington’s disease from Bulgaria

Continue reading “NEW ePAG patient advocate for Huntington’s disease from Bulgaria”

Posted on September 1, 2020August 13, 2024Categories News 2020

Solve-RD Rare Disease Models & Mechanisms Network (RDMM-Europe)

Solve-RD Rare Disease Models & Mechanisms Network (RDMM-Europe)

Continue reading “Solve-RD Rare Disease Models & Mechanisms Network (RDMM-Europe)”

Posted on August 28, 2020August 13, 2024Categories News 2020

Jump for Dystonia competition in September

Jump for Dystonia competition in September

Continue reading “Jump for Dystonia competition in September”

Posted on August 24, 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 22 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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