ERN-RND – Page 4 – ERN-RND | European Reference Network on Rare Neurological Diseases

8 February 2022 | EURORDIS Black Pearl Award Event

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4 – 5 March 2022 | EJP RD workshop: Contemporary outcome measures in NeuroMuscular diseases

Continue reading “4 – 5 March 2022 | EJP RD workshop: Contemporary outcome measures in NeuroMuscular diseases”

United Nations adopts Resolution on persons with rare diseases

Continue reading “United Nations adopts Resolution on persons with rare diseases”

33 new ERN-RND members!

Continue reading “33 new ERN-RND members!”

9 – 11 December 2021 | Workshop: The Future of Medical Data Sharing in Clinical Neurosciences

Digital meeting

HBP, EBRAINS and the EAN invite the entire scientific community to join this workshop on the Future of Medical Data Sharing in Neuroscience.

More information.

8 – 11 December 2021 | European Congress of NeuroRehabilitation 2021

Jointly with 27. Jahrestagung der Deutschen Gesellschaft für Neurorehabilitation

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25 & 26 November 2021 | EPNS accredited VIRTUAL Research Meeting 2021

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25 November 2021 | EJP RD resource webinar on Orphanet

Continue reading “25 November 2021 | EJP RD resource webinar on Orphanet”

22-23 November 2021 | Ataxia Global Initiative symposium

Continue reading “22-23 November 2021 | Ataxia Global Initiative symposium”

18 – 19 November | First International conference on Rare Diseases and Paediatric Research

Continue reading “18 – 19 November | First International conference on Rare Diseases and Paediatric Research”

18 – 19 November | MDS 1st Movement Disorders Clinical Practice Conference

Continue reading “18 – 19 November | MDS 1st Movement Disorders Clinical Practice Conference”

EURORDIS Photo Award

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4 November | Drug repurposing for rare diseases workshop series

Continue reading “4 November | Drug repurposing for rare diseases workshop series”

New CPMS helpdesk

Continue reading “New CPMS helpdesk”

Editorial: Networks in Movement Disorders. To Move or Not to Move

Continue reading “Editorial: Networks in Movement Disorders. To Move or Not to Move”

25 – 27 October | Training: Pluripotent stem cells for rare disease research: banking, data, application (registration deadline 27 September)

Continue reading “25 – 27 October | Training: Pluripotent stem cells for rare disease research: banking, data, application (registration deadline 27 September)”

Publication: “Preparing n-of-1 Antisense Oligonucleotide Treatments for Rare Neurological Diseases in Europe: Genetic, Regulatory, and Ethical Perspectives”

Continue reading “Publication: “Preparing n-of-1 Antisense Oligonucleotide Treatments for Rare Neurological Diseases in Europe: Genetic, Regulatory, and Ethical Perspectives””

15-16 October 2021 | Italian Mitochondrial Disease Conference 2021

Continue reading “15-16 October 2021 | Italian Mitochondrial Disease Conference 2021”

15 & 22 October | MDS-ES and EHDN Joint Online Course Series: Huntington’s Disease: From Foundational Principles to Assessment and Treatment

Continue reading “15 & 22 October | MDS-ES and EHDN Joint Online Course Series: Huntington’s Disease: From Foundational Principles to Assessment and Treatment”

9 November 2021 | ERN-RND webinar “Clinical Outcome Assessments in Ataxias”

Continue reading “9 November 2021 | ERN-RND webinar “Clinical Outcome Assessments in Ataxias””

12 October 2021 | ERN-RND webinar “Functional gait disorders: a sign-based approach”

Continue reading “12 October 2021 | ERN-RND webinar “Functional gait disorders: a sign-based approach””

19 October 2021 | ERN-RND webinar “Oligonucleotide therapies: a new class of drugs that allow precise genetic targeting”

Continue reading “19 October 2021 | ERN-RND webinar “Oligonucleotide therapies: a new class of drugs that allow precise genetic targeting””

18 November 2021 | ERN-RND webinar “Pure autonomic failure: really that pure?”

Continue reading “18 November 2021 | ERN-RND webinar “Pure autonomic failure: really that pure?””

26 October 2021 | ERN-RND webinar “Pelizaeus-Merzbacher disease and related disorders”

Continue reading “26 October 2021 | ERN-RND webinar “Pelizaeus-Merzbacher disease and related disorders””

7 October 2021 | ERN-RND webinar “x-linked adrenoleukodystrophies-Update”

Continue reading “7 October 2021 | ERN-RND webinar “x-linked adrenoleukodystrophies-Update””

3-7 October 2021 | XXV World Congress of Neurology

Continue reading “3-7 October 2021 | XXV World Congress of Neurology”

Available from EJP RD: MOOC Diagnosing Rare Diseases: from the Clinic to Research and back

Continue reading “Available from EJP RD: MOOC Diagnosing Rare Diseases: from the Clinic to Research and back”

September 2021 | Dystonia Awareness Month

Continue reading “September 2021 | Dystonia Awareness Month”

28 September 2021 | ERN-RND webinar “Treatable dystonias & dystonia in inborn errors of metabolism”

Continue reading “28 September 2021 | ERN-RND webinar “Treatable dystonias & dystonia in inborn errors of metabolism””

17-22 September 2021 | MDS Virtual Congress 2021

Continue reading “17-22 September 2021 | MDS Virtual Congress 2021”

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 »

Find us on Bluesky

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

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

💻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
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ERN-RND @ern-rnd.bsky.social 1 week

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

Join our free symposium on European Healthcare for RND patients!
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European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 2 weeks

Stay ahead in #PaediatricNeurology by reading the #EPNS2025 Abstract Book to get quick insights into the latest research, treatments, and breakthroughs:
epns-congress.com/wp-content/u...
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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...