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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 2020

Research article: “Disease Progression and Prognostic Factors in Multiple System Atrophy: A Prospective Cohort Study”

Research article: “Disease Progression and Prognostic Factors in Multiple System Atrophy: A Prospective Cohort Study”

Continue reading “Research article: “Disease Progression and Prognostic Factors in Multiple System Atrophy: A Prospective Cohort Study””

Posted on June 4, 2020August 13, 2024Categories News 2020

Research article: “Awareness of rare and genetic neurological diseases among italian neurologist. A national survey”

Research article: “Awareness of rare and genetic neurological diseases among italian neurologist. A national survey”

Continue reading “Research article: “Awareness of rare and genetic neurological diseases among italian neurologist. A national survey””

Posted on June 4, 2020August 13, 2024Categories News 2020

EFNA position paper on patient involvement in research

EFNA position paper on patient involvement in research

Continue reading “EFNA position paper on patient involvement in research”

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

NEW! ERN-RND introduction video

NEW! ERN-RND introduction video

Continue reading “NEW! ERN-RND introduction video”

Posted on May 27, 2020August 13, 2024Categories News 2020

EJP RD Networking Support Scheme (NSS) open

EJP RD Networking Support Scheme (NSS) open

Continue reading “EJP RD Networking Support Scheme (NSS) open”

Posted on May 26, 2020August 13, 2024Categories News 2020

ERN-RND at ECRD 2020 – summary

ERN-RND at ECRD 2020 – summary

Continue reading “ERN-RND at ECRD 2020 – summary”

Posted on May 22, 2020August 13, 2024Categories News 2020

ERN-RND at EAN congress on 22-26 May 2020

ERN-RND at EAN congress on 22-26 May 2020

Continue reading “ERN-RND at EAN congress on 22-26 May 2020”

Posted on May 20, 2020August 13, 2024Categories News 2020

Livre: “Huntington…et alors? Comprendre la maladie et vivre avec”

Livre: “Huntington…et alors? Comprendre la maladie et vivre avec”

Continue reading “Livre: “Huntington…et alors? Comprendre la maladie et vivre avec””

Posted on May 12, 2020August 13, 2024Categories News 2020

NEW! research article: “Management of rare movement disorders in Europe: outcome of surveys of ERN-RND”

NEW! research article: “Management of rare movement disorders in Europe: outcome of surveys of ERN-RND”

Continue reading “NEW! research article: “Management of rare movement disorders in Europe: outcome of surveys of ERN-RND””

Posted on May 12, 2020August 13, 2024Categories News 2020

May is Huntington’s Disease Awareness Month

May is Huntington’s Disease Awareness Month

Continue reading “May is Huntington’s Disease Awareness Month”

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

ERN-RND May 2020 Newsletter

ERN-RND May 2020 Newsletter

Continue reading “ERN-RND May 2020 Newsletter”

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

Research article: “Cerebrospinal Fluid YKL-40 and Chitotriosidase Levels in Frontotemporal Dementia Vary by Clinical, Genetic and Pathological Subtype”

Research article: “Cerebrospinal Fluid YKL-40 and Chitotriosidase Levels in Frontotemporal Dementia Vary by Clinical, Genetic and Pathological Subtype”

Continue reading “Research article: “Cerebrospinal Fluid YKL-40 and Chitotriosidase Levels in Frontotemporal Dementia Vary by Clinical, Genetic and Pathological Subtype””

Posted on May 5, 2020August 13, 2024Categories News 2020

Research article: “Teaching Video NeuroImages: Palatal tremor associated with SPG7 variants”

Research article: “Teaching Video NeuroImages: Palatal tremor associated with SPG7 variants”

Continue reading “Research article: “Teaching Video NeuroImages: Palatal tremor associated with SPG7 variants””

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

ERN Newsletter – April 2020

ERN Newsletter – April 2020

Continue reading “ERN Newsletter – April 2020”

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

Rare Barometer survey on rare disease patients’ experience of COVID-19

Rare Barometer survey on rare disease patients’ experience of COVID-19

Continue reading “Rare Barometer survey on rare disease patients’ experience of COVID-19”

Posted on April 27, 2020August 13, 2024Categories News 2020

Research article: “Longitudinal dynamics of mutant huntingtin and neurofilament light in Huntington’s disease: the prospective HD-CSF study”

Research article: “Longitudinal dynamics of mutant huntingtin and neurofilament light in Huntington’s disease: the prospective HD-CSF study”

Continue reading “Research article: “Longitudinal dynamics of mutant huntingtin and neurofilament light in Huntington’s disease: the prospective HD-CSF study””

Posted on April 27, 2020August 13, 2024Categories News 2020

Research article: “Driving Performance in Patients With Idiopathic Cervical Dystonia; A Driving Simulator Pilot Study”

Research article: “Driving Performance in Patients With Idiopathic Cervical Dystonia; A Driving Simulator Pilot Study”

Continue reading “Research article: “Driving Performance in Patients With Idiopathic Cervical Dystonia; A Driving Simulator Pilot Study””

Posted on April 27, 2020August 13, 2024Categories News 2020

EAN Movement Disorders Scientific Panel recommendations for COVID-19 pandemic

EAN Movement Disorders Scientific Panel recommendations for COVID-19 pandemic

Continue reading “EAN Movement Disorders Scientific Panel recommendations for COVID-19 pandemic”

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

Dystonia, patient advocacy and the future by Monika Benson

Dystonia, patient advocacy and the future by Monika Benson

Continue reading “Dystonia, patient advocacy and the future by Monika Benson”

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

Recording of webinar on Huntington’s disease & COVID-19 available

Recording of webinar on Huntington’s disease & COVID-19 available

Continue reading “Recording of webinar on Huntington’s disease & COVID-19 available”

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

Guidelines on EU Emergency Assistance in Cross-border Cooperation in Healthcare

Guidelines on EU Emergency Assistance in Cross-border Cooperation in Healthcare

Continue reading “Guidelines on EU Emergency Assistance in Cross-border Cooperation in Healthcare”

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

Solve-RD brokerage call open

Solve-RD brokerage call open

Continue reading “Solve-RD brokerage call open”

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

COVID-19: EURORDIS urges immediate action and proposes concrete solutions for rare disease patients

COVID-19: EURORDIS urges immediate action and proposes concrete solutions for rare disease patients

Continue reading “COVID-19: EURORDIS urges immediate action and proposes concrete solutions for rare disease patients”

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

Webinar on 6 April: “Huntington’s Disease & COVID-19 pandemic – a difficult combination”

Webinar on 6 April: “Huntington’s Disease & COVID-19 pandemic – a difficult combination”

Continue reading “Webinar on 6 April: “Huntington’s Disease & COVID-19 pandemic – a difficult combination””

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

European Commission launches COVID-19 Clinical Management Support System

European Commission launches COVID-19 Clinical Management Support System

Continue reading “European Commission launches COVID-19 Clinical Management Support System”

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

EAN Congress 2020 moves online

EAN Congress 2020 moves online

Continue reading “EAN Congress 2020 moves online”

Posted on March 25, 2020August 13, 2024Categories News 2020

ECRD 2020 moves online

ECRD 2020 moves online

Continue reading “ECRD 2020 moves online”

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

EFNA launches survey on stigma & neurological conditions

EFNA launches survey on stigma & neurological conditions

Continue reading “EFNA launches survey on stigma & neurological conditions”

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

It’s #BrainAwarenessWeek 2020

It’s #BrainAwarenessWeek 2020

Continue reading “It’s #BrainAwarenessWeek 2020”

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

European Reference Networks are 3 years old

European Reference Networks are 3 years old

Continue reading “European Reference Networks are 3 years old”

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

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Webinar Schedule

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ERN-RND

@ern-rnd.bsky.social

168 Followers 90 Following 192 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 1 day

    💻#webinar on “Guidelines on the Assessment and Treatment of Neurogenic Urinary and Sexual Symptoms”
    📅25th November, 3 CET
    🗣️A. Fanciulli and P. Guaraldi, Medical University Innsbruck and Azienda USL di Bologna
    Sign up 👉 https://t1p.de/9chttps://t1p.de/9cxi7app/hashtag/webinar">#webinart with the and
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    ERN-RND @ern-rnd.bsky.social 1 day

    💻 Upcoming #webinar on “Recent Advances in Episodic Ataxias”
    📅 18th November, 3:00 CET
    🗣️ E. Indelicato and D. Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA
    Sign up 👉 https://t1p.de/6uunhttps://t1p.de/6uunpps://bsky.app/hashtag/webinar">#webinar and
  • Get to this post

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

    Welcome everyone to Day 2 of our Annual Meeting 2025! We just started into our Disease Group meetings of today.
  • Get to this post

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

    #QuizNight: A great evening full of laughter, learning, and connection!
    How much do you know about ERN-RND?
    Do you know how many data sets were submitted to the ERN-RND registry in 2024?
  • Get to this post

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

    Patient advocate workshop guided by one key question: what needs our attention most in the RND community? Mental health support? Lack of knowledge and awareness? Tailored transitioning care in adolescence?
    Many inspiring ideas and discussions! We’re excited to see how they’ll shape future projects!
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    ERN-RND @ern-rnd.bsky.social 3 days

    Our Annual Meeting kicked off today with a productive Board Meeting, where we reviewed our achievements from the past 12 months, shared experiences, and discussed exciting new project ideas for the year ahead.
  • Get to this post

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

    Join Till Voigtländer for "Overview and First Results of the JARDIN Project " at our Symposium "European Healthcare for RND Patients", Oct 28 12:00https://f.mtr.cool/mpyqdaaqli.mtr.cool/https://f.mtr.cool/qxrjzcwauh.mtr.cool/qxrjzcwauh
    Abstract: f.mtr.cool/gyblgukxvx

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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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