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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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    • … for rare neurological diseases
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Author: ERN-RND

29-30 October | Organising & maximizing rare disease biological sample data in biobanks

29-30 October | Organising & maximizing rare disease biological sample data in biobanks

Continue reading “29-30 October | Organising & maximizing rare disease biological sample data in biobanks”

Posted on October 30, 2019June 5, 2024Categories Past Events, Past Events 2019

23-25 October | Training course: Quality assurance, variant interpretation and data management in the NGS diagnostics era

23-25 October | Training course: Quality assurance, variant interpretation and data management in the NGS diagnostics era

Continue reading “23-25 October | Training course: Quality assurance, variant interpretation and data management in the NGS diagnostics era”

Posted on October 25, 2019June 5, 2024Categories Past Events, Past Events 2019

24 October | WEBINAR: “CPMS upcoming changes”

24 October | WEBINAR: “CPMS upcoming changes”

Continue reading “24 October | WEBINAR: “CPMS upcoming changes””

Posted on October 24, 2019June 5, 2024Categories Past Events, Past Events 2019

24 October | WEBINAR: “Diagnostic imaging in NMD: the basics”

24 October | WEBINAR: “Diagnostic imaging in NMD: the basics”

Continue reading “24 October | WEBINAR: “Diagnostic imaging in NMD: the basics””

Posted on October 24, 2019June 5, 2024Categories Past Events, Past Events 2019

3-4 October | 8th Annual Symposium on ATP1A3 in Disease

3-4 October | 8th Annual Symposium on ATP1A3 in Disease

Continue reading “3-4 October | 8th Annual Symposium on ATP1A3 in Disease”

Posted on October 4, 2019June 5, 2024Categories Past Events, Past Events 2019

3 October | World MSA Day

Continue reading “3 October | World MSA Day”

Posted on October 3, 2019June 5, 2024Categories Past Events, Past Events 2019

Dystonia Awareness Month | September 2019

Dystonia Awareness Month | September 2019

Continue reading “Dystonia Awareness Month | September 2019”

Posted on October 1, 2019June 5, 2024Categories Past Events, Past Events 2019

30 September | EU Health Programme High Level Conference

30 September | EU Health Programme High Level Conference

Continue reading “30 September | EU Health Programme High Level Conference”

Posted on September 30, 2019June 5, 2024Categories Past Events, Past Events 2019

Call to apply to join an ERN is open until 30 November 2019

Call to apply to join an ERN is open until 30 November 2019

Continue reading “Call to apply to join an ERN is open until 30 November 2019”

Posted on September 30, 2019August 13, 2024Categories News 2019

26-27 September | Nationale Konferenz zu Seltenen Erkrankungen (NAKSE)

26-27 September | Nationale Konferenz zu Seltenen Erkrankungen (NAKSE)

Continue reading “26-27 September | Nationale Konferenz zu Seltenen Erkrankungen (NAKSE)”

Posted on September 27, 2019June 5, 2024Categories Past Events, Past Events 2019

23-27 September | International Summer School on Rare Disease Registries and FAIRification of Data

23-27 September | International Summer School on Rare Disease Registries and FAIRification of Data

Continue reading “23-27 September | International Summer School on Rare Disease Registries and FAIRification of Data”

Posted on September 27, 2019June 5, 2024Categories Past Events, Past Events 2019

22-26 September | International Congress of Parkinson’s Disease & Movement Disorders

22-26 September | International Congress of Parkinson’s Disease & Movement Disorders

Continue reading “22-26 September | International Congress of Parkinson’s Disease & Movement Disorders”

Posted on September 26, 2019June 5, 2024Categories Past Events, Past Events 2019

25 September | International Ataxia Awareness Day

25 September | International Ataxia Awareness Day

Continue reading “25 September | International Ataxia Awareness Day”

Posted on September 25, 2019June 5, 2024Categories Past Events, Past Events 2019

First call for new members to join existing 24 ERNs to be launched on 30 Sept. until 30 Nov.

First call for new members to join existing 24 ERNs to be launched on 30 Sept. until 30 Nov.

Continue reading “First call for new members to join existing 24 ERNs to be launched on 30 Sept. until 30 Nov.”

Posted on September 24, 2019August 13, 2024Categories News 2019

French MSA patient organisation ARAMISE launches fundraising campaign

French MSA patient organisation ARAMISE launches fundraising campaign

Continue reading “French MSA patient organisation ARAMISE launches fundraising campaign”

Posted on September 24, 2019August 13, 2024Categories News 2019

17-21 September | 13th European Paediatric Neurology Society (EPNS) Congress

17-21 September | 13th European Paediatric Neurology Society (EPNS) Congress

Continue reading “17-21 September | 13th European Paediatric Neurology Society (EPNS) Congress”

Posted on September 21, 2019June 5, 2024Categories Past Events, Past Events 2019

20-21 September | 6th International Meeting on Spastic Paraparesis and Ataxia

20-21 September | 6th International Meeting on Spastic Paraparesis and Ataxia

Continue reading “20-21 September | 6th International Meeting on Spastic Paraparesis and Ataxia”

Posted on September 21, 2019June 5, 2024Categories Past Events, Past Events 2019

EBC, EFNA & EAN sent joint open letter to EU leaders

EBC, EFNA & EAN sent joint open letter to EU leaders

Continue reading “EBC, EFNA & EAN sent joint open letter to EU leaders”

Posted on September 20, 2019August 13, 2024Categories News 2019

16 September | Rare disease perspectives in Central – Eastern Europe

16 September | Rare disease perspectives in Central – Eastern Europe

Continue reading “16 September | Rare disease perspectives in Central – Eastern Europe”

Posted on September 16, 2019June 5, 2024Categories Past Events, Past Events 2019

The Ataxia Global Initiatives website is live!

The Ataxia Global Initiatives website is live!

Continue reading “The Ataxia Global Initiatives website is live!”

Posted on September 16, 2019August 13, 2024Categories News 2019

Research News: “A clinical diagnostic algorithm for early onset cerebellar ataxia”

Continue reading “Research News: “A clinical diagnostic algorithm for early onset cerebellar ataxia””

Posted on September 9, 2019August 13, 2024Categories News 2019

Frequently Asked Questions for the ERN call for membership

Frequently Asked Questions for the ERN call for membership

Continue reading “Frequently Asked Questions for the ERN call for membership”

Posted on September 4, 2019August 13, 2024Categories News 2019

Additional documentation available to prepare applications for the 2019 ERN call for membership

Additional documentation available to prepare applications for the 2019 ERN call for membership

Continue reading “Additional documentation available to prepare applications for the 2019 ERN call for membership”

Posted on September 2, 2019August 13, 2024Categories News 2019

Dystonia Awareness Month

Dystonia Awareness Month

Continue reading “Dystonia Awareness Month”

Posted on September 2, 2019August 13, 2024Categories News 2019

Interview with Daria Julkowska, coordinator of the European Joint Programme on Rare Diseases

Interview with Daria Julkowska, coordinator of the European Joint Programme on Rare Diseases

Continue reading “Interview with Daria Julkowska, coordinator of the European Joint Programme on Rare Diseases”

Posted on August 21, 2019August 13, 2024Categories News 2019

European Commission launches Horizon Europe public consultation

European Commission launches Horizon Europe public consultation

Continue reading “European Commission launches Horizon Europe public consultation”

Posted on August 2, 2019August 13, 2024Categories News 2019

2019 call for membership to the existing ERNs to open soon

2019 call for membership to the existing ERNs to open soon

Continue reading “2019 call for membership to the existing ERNs to open soon”

Posted on July 29, 2019August 13, 2024Categories News 2019

22 July 2019 | World Brain Day

22 July 2019 | World Brain Day

Continue reading “22 July 2019 | World Brain Day”

Posted on July 22, 2019June 5, 2024Categories Past Events, Past Events 2019

Report – European Academy of Neurology Congress 2019

Report – European Academy of Neurology Congress 2019

Continue reading “Report – European Academy of Neurology Congress 2019”

Posted on July 16, 2019August 13, 2024Categories News 2019

Report – ERN-RND Annual Meeting 2019

Report – ERN-RND Annual Meeting 2019

Continue reading “Report – ERN-RND Annual Meeting 2019”

Posted on July 16, 2019August 13, 2024Categories News 2019

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Webinar Schedule

Latest News

  • ePAG visit at Children’s Hospital Sant Joan de Déu, Barcelona

    July 7, 2025
    Having a rare disease means spending a lot of time around doctors and hospitals. Places, that even adults will not …read more »
  • 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 »

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ERN-RND

@ern-rnd.bsky.social

156 Followers 88 Following 149 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 1 day

    Get the latest news on #RareNeurologicalDiseases with our monthly newsletter - and don't miss our free webinars and many upcoming events: www.ern-rnd.eu?mailpoet_rou...

    #RareDisease #RareDiseases #HSP #Dystonia #HutingtonDisease #Ataxia #FriedreichAtaxia #Leukodystrophy #FrontotemporalDementia
  • Get to this post

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

    💻 U#webinar#webinar on “Social and Lifestyle Issues Related to FTD and PPA”
    📅 30th September, 3:00 CEST
    🗣️ Alexa Häger, University Hospital Aachen, Germany
    Sign https://t1p.de/z2acade/z2aca

    Joint with the European Reference Network for Rare Neuromuscular Diseases and
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 2 weeks

    💻U#webinar#webinar on “Patient Journeys: Reliable Comprehensive Documents which Summarise a Rare Disease”
    📅23rd September, 3 CEST
    🗣️P. Mihaylova & M. Kearney, Tallaght University Hospital
    Sighttps://t1p.de/3r6k3de/3r6k3
    Joint w/ the European Reference Network for Rare Neuromuscular Diseases and
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 2 weeks

    Participate in the #EU4Health #Survey on current and future health priorities till September 30! The #Survey is inviting interested stakeholders to share their views on future priorities, orientations and needs for the future of the EU4Health programme.
    hadea.ec.europa.eu/news/targete...
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 2 weeks

    What's the status on European #healthcare for rare neurological diseases in #ERNs?

    Join our Symposium on October 28 online (free of charge): tinyurl.com/yc3yts72

    Find the programme here: www.ern-rnd.eu/wp-content/u...
  • Get to this post

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

    Join our free symposium on European Healthcare for RND patients!
  • Get to this post

    European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 3 weeks

    Next FREE YEPNS Case Discussion!

    Join us for an interactive journey through three compelling paediatric neurology cases—from clarity to enigma.

    Register at: us02web.zoom.us/webinar/regi...

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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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