Skip to content
  • Facebook
  • LinkedIn
  • Bluesky
  • YouTube
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
    • What is ERN-RND
    • Objectives of ERN-RND
    • Diseases Groups Covered
    • ERN-RND coordinators
    • ERN-RND coordination office
    • ERN-RND board
    • Patient advocates
    • Work Packages
    • Monitoring
    • Publications Acknowledging ERN-RND
  • Expert Centres
    • … for rare neurological diseases
    • Full members and affiliated partners
    • How to contact expert centres
    • Supporting partners
    • Map of expert centers
    • Overview ERNs
  • Online case discussion with CPMS
    • What is the CPMS
    • Who can use it
    • How to use it
    • MLD Treatment eligibility panel
    • Neuroradiology Expert Advice Panel
    • Multidisciplinary Board for DBS in Dystonia
    • CPMS Helpdesk
    • Videos
    • Downloads
    • Websites
  • Disease Knowledge
    • Cerebellar Ataxia & Hereditary Spastic Paraplegias (HSPs)
    • Chorea & Huntington’s disease
    • Dystonias, NBIA and Paroxysmal Disorders
    • Frontotemporal dementia
    • Leukoencephalopathies
    • Atypical Parkinsonism: MSA, PSP & Genetic Parkinson’s Disease
    • ERN-RND Patient Journeys
  • Education & Training
    • Online Medical Education
    • Upcoming Webinars
    • Training Resources
    • Webinars from Partners
    • Winter School
  • ERN-RND Registry
    • ERN-RND registry objectives
    • Disease Groups covered
    • Data Submission
      • Data Analysis 2023
    • Data Access
    • Contact
  • Collab­ora­tions
    • Projects
    • Partner organisations
    • Past projects
      • EJP RD
        • EJP RD in a nutshell
        • What is EJP RD?
        • EJP RD mission & goals
        • EJP RD & ERNs
      • Solve-RD
        • What is Solve-RD?
        • Main Objectives
        • Implementation Steps
        • Analysis
      • Value of Treatment (VoT) project
        • VoT project coordinator
        • Objectives of the VoT project
        • ERN-RND in VoT2
        • Academic partners in VoT2
        • Further reading
  • News & Events
    • News
    • Events
    • Newsletter
    • Meet the members
  • Contact us
  • Facebook
  • LinkedIn
  • Bluesky
  • YouTube

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

Posts pagination

Previous page Page 1 … Page 10 Page 11 Page 12 … Page 17 Next page

Webinar Schedule

Find us on Bluesky

ERN-RND

@ern-rnd.bsky.social

167 Followers 90 Following 184 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 4 days

    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
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 5 days

    One week to go for "European #Healthcare for RND Patients" - our Scientific #Symposium on October 28! Join us and register now for online participation - #free of charge: us02web.zoom.us/webinar/regi...

    Learn more about the speakers and topics here: www.ern-rnd.eu/wp-content/u...
  • Get to this post

    European Academy of Neurology @ean.org 1 week

    Join Europe’s leading minds in neuroscience, innovation, and policy for the #EBRAINSSummit2025 – Transforming Brain Research and Medicine – live in Brussels on 8-11 December!

    🔗 Register here: summit2025.ebrains.eu
  • Get to this post

    ERDERA @erdera.bsky.social 1 week

    What are European Reference Networks (ERNs) and what is their role in the rare disease ecosystem?💡In ERDERA, ERNs are central to our mission, acting as gateways to clinicians and patients across Europe 👀 https://loom.ly/FCHBS38
  • Get to this post

    ERDERA @erdera.bsky.social 1 week

    Regulatory news | 🗞️ The EMA and EU partners have released the final report of the EU Repurposing Pilot, supporting new uses for off-patent medicines in rare diseases and paediatric care.
    🔗 Access the report: https://loom.ly/zcpVZfg
    👉 Find out more: https://loom.ly/afsfGWA
    #ERDERA #RareDiseases
  • Get to this post

    European Academy of Neurology @ean.org 2 weeks

    Start your journey toward becoming a certified Ambassador for Neurology and Brain Health!🧠

    Applications are NOW OPEN for the third edition of the EAN Advocacy Training Programme!

    ➡️More info on the programme, eligibility, and application: buff.ly/CxmJCr3
  • Get to this post

    ERDERA @erdera.bsky.social 2 weeks

    🔬 Exciting news: ERDERA joins forces with the European Genomic Data Infrastructure project (GDI) to advance rare disease research and diagnosis across Europe. Launching 14 Oct in Paris. 🌍 👉 Read more: https://loom.ly/7lthRbQ
    #RareDiseases #GenomicData #1MGenomes

Find us on Facebook

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

  • Facebook
  • LinkedIn
  • Bluesky
  • YouTube

Sitemap | Disclaimer and Data Protection

We serve cookies on this site to analyse traffic, remember your preferences, and optimise your experience.