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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

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

3 December 2020 | Round table: providing better access to care and treatment for HD & RND patients

3 December 2020 | Round table: providing better access to care and treatment for HD & RND patients

Continue reading “3 December 2020 | Round table: providing better access to care and treatment for HD & RND patients”

Posted on December 3, 2020June 5, 2024Categories Past Events, Past Events 2020

3 December 2020 | Dystonia Europe webinar “Botulinum toxin therapy of dystonia: what is new?”

3 December 2020 | Dystonia Europe webinar “Botulinum toxin therapy of dystonia: what is new?”

Continue reading “3 December 2020 | Dystonia Europe webinar “Botulinum toxin therapy of dystonia: what is new?””

Posted on December 3, 2020June 5, 2024Categories Past Events, Past Events 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 December 1, 2020June 5, 2024Categories Past Events, Past Events 2020

EAN Congress 2021 goes virtual

EAN Congress 2021 goes virtual

Continue reading “EAN Congress 2021 goes virtual”

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

Research article: “Early Onset Ataxia with Comorbid Dystonia: Clinical, Anatomical and Biological Pathway Analysis Expose Shared Pathophysiology”

Research article: “Early Onset Ataxia with Comorbid Dystonia: Clinical, Anatomical and Biological Pathway Analysis Expose Shared Pathophysiology”

Continue reading “Research article: “Early Onset Ataxia with Comorbid Dystonia: Clinical, Anatomical and Biological Pathway Analysis Expose Shared Pathophysiology””

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

Review article: “A Proposed Diagnostic Algorithm for Inborn Errors of Metabolism Presenting With Movements Disorders”

Review article: “A Proposed Diagnostic Algorithm for Inborn Errors of Metabolism Presenting With Movements Disorders”

Continue reading “Review article: “A Proposed Diagnostic Algorithm for Inborn Errors of Metabolism Presenting With Movements Disorders””

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

24 November 2020 | ERN-RND webinar “Development of Sara-home: a novel assessment tool for patients with ataxia “

24 November 2020 | ERN-RND webinar “Development of Sara-home: a novel assessment tool for patients with ataxia “

Continue reading “24 November 2020 | ERN-RND webinar “Development of Sara-home: a novel assessment tool for patients with ataxia “”

Posted on November 24, 2020June 5, 2024Categories Past Events, Past Events 2020

24 November 2020 | Annual meeting for patient organisations BRAIN-TEAM

24 November 2020 | Annual meeting for patient organisations BRAIN-TEAM

Continue reading “24 November 2020 | Annual meeting for patient organisations BRAIN-TEAM”

Posted on November 24, 2020June 5, 2024Categories Past Events, Past Events 2020

Manifesto for a European Health Union – please SIGN

Manifesto for a European Health Union – please SIGN

Continue reading “Manifesto for a European Health Union – please SIGN”

Posted on November 24, 2020August 13, 2024Categories News 2020

19 November 2020 | EURO-NMD webinar “Congenital Myasthenia Syndrome – an update”

19 November 2020 | EURO-NMD webinar “Congenital Myasthenia Syndrome – an update”

Continue reading “19 November 2020 | EURO-NMD webinar “Congenital Myasthenia Syndrome – an update””

Posted on November 19, 2020June 5, 2024Categories Past Events, Past Events 2020

Research article: “A Gain‐of‐Function Variant in Dopamine D2 Receptor and Progressive Chorea and Dystonia Phenotype”

Research article: “A Gain‐of‐Function Variant in Dopamine D2 Receptor and Progressive Chorea and Dystonia Phenotype”

Continue reading “Research article: “A Gain‐of‐Function Variant in Dopamine D2 Receptor and Progressive Chorea and Dystonia Phenotype””

Posted on November 19, 2020August 13, 2024Categories News 2020

18 November 2020 | ERN-RND virtual Board Meeting (fall)

18 November 2020 | ERN-RND virtual Board Meeting (fall)

Continue reading “18 November 2020 | ERN-RND virtual Board Meeting (fall)”

Posted on November 18, 2020June 5, 2024Categories Past Events, Past Events 2020

Research article: “Diagnostic approach to paediatric movement disorders”

Research article: “Diagnostic approach to paediatric movement disorders”

Continue reading “Research article: “Diagnostic approach to paediatric movement disorders””

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

New research article: “Low-frequency oscillation suppression in dystonia: Implications for adaptive deep brain stimulation”

New research article: “Low-frequency oscillation suppression in dystonia: Implications for adaptive deep brain stimulation”

Continue reading “New research article: “Low-frequency oscillation suppression in dystonia: Implications for adaptive deep brain stimulation””

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

10 November 2020 | ERN-RND webinar “Rehabilitation in ataxia: current evidence & practice”

10 November 2020 | ERN-RND webinar “Rehabilitation in ataxia: current evidence & practice”

Continue reading “10 November 2020 | ERN-RND webinar “Rehabilitation in ataxia: current evidence & practice””

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

ERN-RND November 2020 Newsletter

ERN-RND November 2020 Newsletter
Continue reading “ERN-RND November 2020 Newsletter”
Posted on November 4, 2020August 13, 2024Categories News 2020

3 November 2020 | ERN-RND webinar “Non-invasive stimulation for ataxias”

3 November 2020 | ERN-RND webinar “Non-invasive stimulation for ataxias”

Continue reading “3 November 2020 | ERN-RND webinar “Non-invasive stimulation for ataxias””

Posted on November 3, 2020June 5, 2024Categories Past Events, Past Events 2020

Research article: “Myoclonus‐Ataxia syndromes: a diagnostic approach”

Research article: “Myoclonus‐Ataxia syndromes: a diagnostic approach”

Continue reading “Research article: “Myoclonus‐Ataxia syndromes: a diagnostic approach””

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

29 October 2020 | EURO-NMD webinar “Personalized care for patients with ALS: ALS Home monitoring & coaching”

29 October 2020 | EURO-NMD webinar “Personalized care for patients with ALS: ALS Home monitoring & coaching”

Continue reading “29 October 2020 | EURO-NMD webinar “Personalized care for patients with ALS: ALS Home monitoring & coaching””

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

SARA training tool by DZNE

SARA training tool by DZNE

Continue reading “SARA training tool by DZNE”

Posted on October 29, 2020January 21, 2025Categories News 2020

EPNS Congress 2021 postponed

EPNS Congress 2021 postponed

Continue reading “EPNS Congress 2021 postponed”

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

EJP RD Fellowship experience in Tübingen, Germany

EJP RD Fellowship experience in Tübingen, Germany

Continue reading “EJP RD Fellowship experience in Tübingen, Germany”

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

Research article: “Toward allele-specific targeting therapy and pharmacodynamic marker for spinocerebellar ataxia type 3”

Research article: “Toward allele-specific targeting therapy and pharmacodynamic marker for spinocerebellar ataxia type 3”

Continue reading “Research article: “Toward allele-specific targeting therapy and pharmacodynamic marker for spinocerebellar ataxia type 3””

Posted on October 23, 2020August 13, 2024Categories News 2020

ERN animation clip subtitled and dubbed in EU languages

ERN animation clip subtitled and dubbed in EU languages

Continue reading “ERN animation clip subtitled and dubbed in EU languages”

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

19-21 October 2020 | SCA & ARCA Global Conference

19-21 October 2020 | SCA & ARCA Global Conference

Continue reading “19-21 October 2020 | SCA & ARCA Global Conference”

Posted on October 21, 2020June 5, 2024Categories Past Events, Past Events 2020

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Webinar Schedule

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ERN-RND

@ern-rnd.bsky.social

167 Followers 90 Following 193 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 17 hours

    💻 Upcoming #webinar on “Fluid Biomarkers in Frontotemporal Dementia”
    📅 2nd December, 3:00 CET
    🗣️ Domenico Plantone, AOU - University Hospital Siena, Italy

    Sign up 👉https://t1p.de/9hsbhttps://t1p.de/9hsbctps://bsky.app/hashtag/webinar">#webinar and
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    ERN-RND @ern-rnd.bsky.social 1 week

    💻#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
  • Get to this post

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

    💻 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 1 week

    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 1 week

    #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 1 week

    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!
  • Get to this post

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

    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.

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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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