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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

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

27-29 April 2020 | ‘Training on strategies to foster solutions of undiagnosed rare disease cases’

27-29 April 2020 | ‘Training on strategies to foster solutions of undiagnosed rare disease cases’

Continue reading “27-29 April 2020 | ‘Training on strategies to foster solutions of undiagnosed rare disease cases’”

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

29 April | Share4Rare webinar: “State of the Art of Rare Disease Activities in Europe”

29 April | Share4Rare webinar: “State of the Art of Rare Disease Activities in Europe”

Continue reading “29 April | Share4Rare webinar: “State of the Art of Rare Disease Activities in Europe””

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

23 April 2020 | EURO-NMD webinar “exercise & NMD”

23 April 2020 | EURO-NMD webinar “exercise & NMD”

Continue reading “23 April 2020 | EURO-NMD webinar “exercise & NMD””

Posted on April 23, 2020June 5, 2024Categories Past Events, Past Events 2020

21 April 2020 | ERN-RND webinar “hypomyelination”

21 April 2020 | ERN-RND webinar “hypomyelination”

Continue reading “21 April 2020 | ERN-RND webinar “hypomyelination””

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

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ERN-RND

@ern-rnd.bsky.social

165 Followers 90 Following 181 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 24 hours

    Join us to learn about "National Support of ERN Members" with Pavla Doležalová at our Symposium "European Healthcare for RND Patients", Oct 28, 13:00https://f.mtr.cool/xjwsmnhdbu.mtr.cool/https://f.mtr.cool/wdrklamqcs.mtr.cool/whttps://f.mtr.cool/gyblgukxvx.mtr.cool/gyblgukxvx
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 6 days

    Learn from Martin Reich in "Deep Brain Stimulation - Pitch and Live Case Discussion" at the Scientific Symposium "European Healthcare for RND Patients", Oct 28, 11:00 CET.

    Registration (free of charge): t1p.de/k7tec
    Program: t1p.de/u62ba
    Abstract: tinyurl.com/y7yx8e5v
  • Get to this post

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

    It's time for #RareNeurologicalDisease #news: this month with a video #interview on developing a guideline on NKX1-2-related disorders, 3 updated #PatientJourneys and a lot of surveys, workshops, congresses and symposia! Read our #newsletter here: www.ern-rnd.eu?mailpoet_rou...
  • Get to this post

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

    Curious about "Development and Implementation of ERN Care Pathways"? Join Birutė Tumienė at our Symposium "European Healthcare for RND Phttps://f.mtr.cool/gaopxhezhjRegistratihttps://f.mtr.cool/usfnrgxwhxhezhj
    Program: https://f.mtr.cool/usfnrgxwhx


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

    Don’t miss the "Krabbe Disease Expert Panel"- Pascal Martin shares expertise at the Scientific Symposium "European Healthcare for RND Patients", Oct 28, 9:20 CET.

    Registration (free of charge): https://f.mtr.cool/icvnhnnvbw
    Prohttps://f.mtr.cool/icvnhnnvbwpeugjx
     
    https://f.mtr.cool/cepqpeugjxhtag/KrabbeDisease">#KrabbeDisease
  • Get to this post

    European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 2 weeks

    Still time to register for the next FREE EPNS webinar!
    Wed 8 Oct 2025 | 17:00 CET
    Topic: Neurological complications of paediatric cancer & treatment
    Live on Zoom | Open to all!
    Register free: us02web.zoom.us/webinar/regi...
    #EPNS #PaediatricNeurology
  • Get to this post

    European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 2 weeks

    Join the next EPNS Journal Club

    Wed 22 Oct 2025 at 17:00 CET

    Differential diagnosis and comparison of diagnostic algorithms in children and adolescents with autoimmune encephalitis in Spain

    Free & open to all
    Register us02web.zoom.us/webinar/regi...
    Article: pubmed.ncbi.nlm.nih.gov/39706634/

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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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