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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

Members Area
  • Home
  • About us
    • What is an ERN
    • Cross border healthcare
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  • Expert Centres
    • … for rare neurological diseases
    • Full members and affiliated partners
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  • Online case discussion with CPMS
    • What is the CPMS
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  • Disease Knowledge
    • Cerebellar Ataxia & Hereditary Spastic Paraplegias (HSPs)
    • Chorea & Huntington’s disease
    • Dystonias, NBIA and Paroxysmal Disorders
    • Frontotemporal dementia
    • Leukodystrophies
    • Atypical Parkinsonism: MSA, PSP & Genetic Parkinson’s Disease
    • ERN-RND Patient Journeys
  • Education & Training
    • Postgraduate Curriculum in Rare Neurological Diseases
      • Module: Ataxia/HSPs
    • Online Medical Education
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      • EJP RD
        • EJP RD in a nutshell
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        • What is Solve-RD?
        • Main Objectives
        • Implementation Steps
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      • Value of Treatment (VoT) project
        • VoT project coordinator
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Author: ERN-RND

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

David Marsden Award 2021 – open call for submission

David Marsden Award 2021 – open call for submission

Continue reading “David Marsden Award 2021 – open call for submission”

Posted on August 21, 2020August 13, 2024Categories News 2020

New FTD website by FTD talk team

New FTD website by FTD talk team

Continue reading “New FTD website by FTD talk team”

Posted on August 21, 2020August 13, 2024Categories News 2020

SCA & ARCA Global Online Conference 2020 – Abstract submission

SCA & ARCA Global Online Conference 2020 – Abstract submission

Continue reading “SCA & ARCA Global Online Conference 2020 – Abstract submission”

Posted on July 31, 2020August 13, 2024Categories News 2020

Webinars on Leukodystrophies by ELA Deutschland

Webinars on Leukodystrophies by ELA Deutschland

Continue reading “Webinars on Leukodystrophies by ELA Deutschland”

Posted on July 31, 2020August 13, 2024Categories News 2020

Results of EFNA’s survey on stigma & neurological disorder

Results of EFNA’s survey on stigma & neurological disorder

Continue reading “Results of EFNA’s survey on stigma & neurological disorder”

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

EURORDIS Winter School 2021

EURORDIS Winter School 2021

Continue reading “EURORDIS Winter School 2021”

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

22 July 2020 | World Brain Day

22 July 2020 | World Brain Day

Continue reading “22 July 2020 | World Brain Day”

Posted on July 22, 2020June 5, 2024Categories Past Events, Past Events 2020

Share4Rare – new international patient registry for COVID-19

Share4Rare – new international patient registry for COVID-19

Continue reading “Share4Rare – new international patient registry for COVID-19”

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

2020 CEF Telecom call – eHealth open

2020 CEF Telecom call – eHealth open

Continue reading “2020 CEF Telecom call – eHealth open”

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

EAN sets up the Ean NEuro-covid ReGistrY (ENERGY)

EAN sets up the Ean NEuro-covid ReGistrY (ENERGY)

Continue reading “EAN sets up the Ean NEuro-covid ReGistrY (ENERGY)”

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

#BrainLifeGoals campaign on World Brain Day 2020

#BrainLifeGoals campaign on World Brain Day 2020

Continue reading “#BrainLifeGoals campaign on World Brain Day 2020”

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

11-15 July 2020 | (Virtual) 12th FENS Forum of Neuroscience

11-15 July 2020 | (Virtual) 12th FENS Forum of Neuroscience

Continue reading “11-15 July 2020 | (Virtual) 12th FENS Forum of Neuroscience”

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

14 July 2020 | ERN-RND webinar “Gait rehabilitation in people with Hereditary Spastic Paraplegia & Respiratory physiotherapy in parkinson’s plus syndromes”

14 July 2020 | ERN-RND webinar “Gait rehabilitation in people with Hereditary Spastic Paraplegia & Respiratory physiotherapy in parkinson’s plus syndromes”

Continue reading “14 July 2020 | ERN-RND webinar “Gait rehabilitation in people with Hereditary Spastic Paraplegia & Respiratory physiotherapy in parkinson’s plus syndromes””

Posted on July 14, 2020June 5, 2024Categories Past Events, Past Events 2020

NEW ePAG patient advocate for Leukodystrophies from Germany

NEW ePAG patient advocate for Leukodystrophies from Germany

Continue reading “NEW ePAG patient advocate for Leukodystrophies from Germany”

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

9 July 2020 | ERN-RND webinar “Environmental modifiers in Hereditary Spastic Paraplegia”

9 July 2020 | ERN-RND webinar “Environmental modifiers in Hereditary Spastic Paraplegia”

Continue reading “9 July 2020 | ERN-RND webinar “Environmental modifiers in Hereditary Spastic Paraplegia””

Posted on July 9, 2020June 5, 2024Categories Past Events, Past Events 2020

Research article: “COVID‑19 reveals influence of physical activity on symptom severity in hereditary spastic paraplegia”

Research article: “COVID‑19 reveals influence of physical activity on symptom severity in hereditary spastic paraplegia”

Continue reading “Research article: “COVID‑19 reveals influence of physical activity on symptom severity in hereditary spastic paraplegia””

Posted on July 9, 2020August 13, 2024Categories News 2020

ERN-RND July 2020 Newsletter

ERN-RND July 2020 Newsletter

Continue reading “ERN-RND July 2020 Newsletter”

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

SCA & ARCA Global online Conference – registration is open

SCA & ARCA Global online Conference – registration is open

Continue reading “SCA & ARCA Global online Conference – registration is open”

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

30 June 2020 | ERN-RND webinar “RCT on intrathecal baclofen for dystonia”

30 June 2020 | ERN-RND webinar “RCT on intrathecal baclofen for dystonia”

Continue reading “30 June 2020 | ERN-RND webinar “RCT on intrathecal baclofen for dystonia””

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

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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/

  • 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

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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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