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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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    • What is an ERN
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    • … for rare neurological diseases
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  • Disease Knowledge
    • Cerebellar Ataxia & Hereditary Spastic Paraplegias (HSPs)
    • Chorea & Huntington’s disease
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      • Module: Ataxia/HSPs
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      • EJP RD
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Author: ERN-RND

EJP RD course “International Summer School on Rare Disease Registries and FAIRification of Data”

EJP RD course “International Summer School on Rare Disease Registries and FAIRification of Data”

Continue reading “EJP RD course “International Summer School on Rare Disease Registries and FAIRification of Data””

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

Research article: “Features of Speech and Swallowing Dysfunction in Pre-Ataxic Spinocerebellar Ataxia Type 2”

Research article: “Features of Speech and Swallowing Dysfunction in Pre-Ataxic Spinocerebellar Ataxia Type 2”

Continue reading “Research article: “Features of Speech and Swallowing Dysfunction in Pre-Ataxic Spinocerebellar Ataxia Type 2””

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

18 June 2020 | ERN-RND webinar “Goal setting and outcome measures of interventions in pediatric rehabilitation”

18 June 2020 | ERN-RND webinar “Goal setting and outcome measures of interventions in pediatric rehabilitation”

Continue reading “18 June 2020 | ERN-RND webinar “Goal setting and outcome measures of interventions in pediatric rehabilitation””

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

18 June 2020 | Webinar “A data strategy for the European Reference Networks”

18 June 2020 | Webinar “A data strategy for the European Reference Networks”

Continue reading “18 June 2020 | Webinar “A data strategy for the European Reference Networks””

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

Dystonia Europe & European Huntington Association receive #BrainLifeGoals project grant

Dystonia Europe & European Huntington Association receive #BrainLifeGoals project grant

Continue reading “Dystonia Europe & European Huntington Association receive #BrainLifeGoals project grant”

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

15-16-17 June 2020 | ERN-RND (virtual) Annual Meeting

15-16-17 June 2020 | ERN-RND (virtual) Annual Meeting

Continue reading “15-16-17 June 2020 | ERN-RND (virtual) Annual Meeting”

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

16 June 2020 | Webinar “Advancing the rare disease research agenda”

16 June 2020 | Webinar “Advancing the rare disease research agenda”

Continue reading “16 June 2020 | Webinar “Advancing the rare disease research agenda””

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

EPNS 2021, abstract submission open

EPNS 2021, abstract submission open

Continue reading “EPNS 2021, abstract submission open”

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

6-9 June 2020 | ESHG 2020.2 – Live in your living room

6-9 June 2020 | ESHG 2020.2 – Live in your living room

Continue reading “6-9 June 2020 | ESHG 2020.2 – Live in your living room”

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

9 June 2020 | Webinar “The impact of COVID 19 for people living with a Rare Disease” by EC & EURORDIS

9 June 2020 | Webinar “The impact of COVID 19 for people living with a Rare Disease” by EC & EURORDIS

Continue reading “9 June 2020 | Webinar “The impact of COVID 19 for people living with a Rare Disease” by EC & EURORDIS”

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

NEW Euro-HSP Facebook page

NEW Euro-HSP Facebook page

Continue reading “NEW Euro-HSP Facebook page”

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

ERN-RND June Newsletter 2020 – CORRECTION

ERN-RND June Newsletter 2020 – CORRECTION

Continue reading “ERN-RND June Newsletter 2020 – CORRECTION”

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

EJP RD fellowship awarded to ERN-RND member

EJP RD fellowship awarded to ERN-RND member

Continue reading “EJP RD fellowship awarded to ERN-RND member”

Posted on June 8, 2020August 13, 2024Categories 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

23-26 May 2020 | 6th (Virtual) Congress of the European Academy of Neurology

23-26 May 2020 | 6th (Virtual) Congress of the European Academy of Neurology

Continue reading “23-26 May 2020 | 6th (Virtual) Congress of the European Academy of Neurology”

Posted on May 26, 2020June 5, 2024Categories Past Events, Past Events 2020

26 May 2020 | ERN-RND webinar “Primary progressive aphasia subtyping in clinical practice”

26 May 2020 | ERN-RND webinar “Primary progressive aphasia subtyping in clinical practice”

Continue reading “26 May 2020 | ERN-RND webinar “Primary progressive aphasia subtyping in clinical practice””

Posted on May 26, 2020June 5, 2024Categories Past Events, Past Events 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

14-15 May 2020 | 10th European Conference on Rare Diseases & Orphan Products (ECRD2020)

14-15 May 2020 | 10th European Conference on Rare Diseases & Orphan Products (ECRD2020)

Continue reading “14-15 May 2020 | 10th European Conference on Rare Diseases & Orphan Products (ECRD2020)”

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

12 May 2020 | ERN-RND webinar “paroxysmal dyskinesias: update on clinical and genetic aspects”

12 May 2020 | ERN-RND webinar “paroxysmal dyskinesias: update on clinical and genetic aspects”

Continue reading “12 May 2020 | ERN-RND webinar “paroxysmal dyskinesias: update on clinical and genetic aspects””

Posted on May 12, 2020June 5, 2024Categories Past Events, Past Events 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

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Webinar Schedule

Find us on Bluesky

ERN-RND

@ern-rnd.bsky.social

188 Followers 92 Following 266 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/

Last updated 10 minutes ago

  • View post by ERN-RND on Bluesky

    ERN-RND @ern-rnd.bsky.social 21 hours

    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
  • View post by ERN-RND on Bluesky

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

    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
  • View post by ERN-RND on Bluesky

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

    It's launched: The -- first -- UEMS approved medical training on Rare Neurological Diseases! It consists of webinars, virtual patient cases and a stay in an expert-centre for hands-on-training.
    💬 1
  • View post by ERN-RND on Bluesky

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

    Today at #EAN2026 we are launching the first UEMS approved training on Rare Neurological Diseases: our #PostgraduateCurriculum. Join the talk of our coordinator Holm Graessner to learn how our modular training works, who it is for and be one of the first to apply!
    10:35 CEST, Scientific Theatre
  • View post by ERN-RND on Bluesky

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

    Are you at #EAN2026? Then stop by and say hi! We are at the exhibition hall right in front of the Main Auditorium and are looking forward to meeting you.
  • View post by ERN-RND on Bluesky

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

    #EAN2026 is about to start! Come to visit us at our booth (N31) in the Neurohood Exhibition Area and learn more about our new modular #PostgraduateCurriculum
    ❤️ 1
  • View post by ERN-RND on Bluesky

    ERN-RND @ern-rnd.bsky.social 4 weeks

    Our new #PostgraduateCurriculum --- UEMS approved --- is about to start soon! Our coordinator Holm Graessner will present the Curriculum at this year's #EAN2026 Congress on Sunday, June 28 at 10:35 CEST! Join us to learn more about our curriculum and how you can apply! #EAN2026
Last updated 10 minutes ago

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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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