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
    • Leukodystrophies
    • 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

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

13 October 2020 | ERN-RND webinar “diagnostic algorithm for childhood onset chorea”

13 October 2020 | ERN-RND webinar “diagnostic algorithm for childhood onset chorea”

Continue reading “13 October 2020 | ERN-RND webinar “diagnostic algorithm for childhood onset chorea””

Posted on October 13, 2020June 5, 2024Categories Past Events, Past Events 2020

12 October 2020 | EJP RD Selection of Topics for Research Training Workshops call DEADLINE

12 October 2020 | EJP RD Selection of Topics for Research Training Workshops call DEADLINE

Continue reading “12 October 2020 | EJP RD Selection of Topics for Research Training Workshops call DEADLINE”

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

7-10 0ctober 2020 | 11th World Congress of Neurorehabilitation

7-10 0ctober 2020 | 11th World Congress of Neurorehabilitation

Continue reading “7-10 0ctober 2020 | 11th World Congress of Neurorehabilitation”

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

Posts pagination

Previous page Page 1 … Page 7 Page 8 Page 9 … Page 17 Next page

Webinar Schedule

Latest News

  • Meet us at EAN2025

    June 11, 2025
    Are you at this year’s EAN Congress in Helsinki? Then come and visit us at our booth (N21) in the …read more »
  • Review on DBS for Dystonia

    June 11, 2025
    Despite considerable achievements in genetics in dystonias, their response to possible treatment such as Deep Brain Stimulation (DBS) remains to …read more »
  • John Gerbild elected as Board Director for EURORDIS

    May 19, 2025
    We are happy to announce that our patient advocate John Gerbild (representative for: Ataxia/HSP) is now a newly elected Board …read more »

Find us on Bluesky

ERN-RND

@ern-rnd.bsky.social

145 Followers 84 Following 121 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/webinars/

  • Get to this post

    ERN-RND @ern-rnd.bsky.social 11 hours

    #WorldBrainDay is coming up on July 22! We asked our network: "If you could change one thing in the health care system for Rare Neurological Diseases what would that be and why?"

    This is what our patient representative Mary Kearney (Friedreich's #Ataxia) said.

    #WorldBrainDay2025 #WorldBrainDay25
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 7 days

    Bye bye #EAN2025: meeting members and partners, introducing pur new postgraduate curriculum (hosted on eanCampus), talking about future projects, planning new cooperations - we had a great time in Helsinki and are looking forward to the #EAN2026 In Geneva! #EAN2026
  • Get to this post

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

    EAN2025 - #PublicBrainHealthDay #BrainHealthMission

    I"f you could change ONE THING in the health care system for rare neurological diseases - what do you think is needed most and why?"

    This is what our coordinator Holm Graessner would change first:

    #ToBeContinued - more to come soon! #ToBeContinued
  • Get to this post

    Parkinson's Europe @parkinsonseurope.bsky.social 1 week

    We're loving #EAN2025! Come to our booth in the Neurohood area - N18 - and say hello, and pick up some Parkinson's Passports (in six languages!). ❤️ 🌷

    #Parkinsons #Parkinson ‪@ean.org‬
  • Get to this post

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

    #EAN2025 Come and learn more about our new online medical education programme - we are in the Neurohood, N21
  • Get to this post

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

    #Today: Learn more about ERNs and current practices on genetic therapies in Europe at 17.25 CEST in the Scientific Theatre - the talk will be held by Kleopas Kleopa and will include practices from ERN-RND and EURO-NMD European Reference Network for Rare Neuromuscular Diseases
  • Get to this post

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

    #EAN2025: Meet the ERNs at the the EAN Congress. Come and find us and EURO-NMD European Reference Network for Rare Neuromuscular Diseases at the booth N21 in the Neurohood!

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.OKNo 3rd party cookiesData-Protection