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

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

Continue reading “25 & 26 November 2021 | EPNS accredited VIRTUAL Research Meeting 2021”

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

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

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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

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New CPMS helpdesk

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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

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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”

14 September 2021 | ERN-RND webinar “Genetic forms of Parkinson’s disease”

Continue reading “14 September 2021 | ERN-RND webinar “Genetic forms of Parkinson’s disease””

9-11 September 2021 | EHDN plenary meeting

Continue reading “9-11 September 2021 | EHDN plenary meeting”

New EJP RD training: “Pluripotent stem cells for rare disease research: banking, data, application”

Continue reading “New EJP RD training: “Pluripotent stem cells for rare disease research: banking, data, application””

Launch of the ERN Research Training Workshops funding opportunity

Continue reading “Launch of the ERN Research Training Workshops funding opportunity”

4 September 2021 | Dystonia Europe Annual Conference – Dystonia Day

Continue reading “4 September 2021 | Dystonia Europe Annual Conference – Dystonia Day”

Clinical Practice for Primary Progressive Aphasia (PPA) – Interview with Robert Rusina
May 5, 2025
It takes „about one year from the first symptoms to the first consultation of a physician, and another one year …read more »
Survey on Myoclonus Dystonia Syndrome
April 10, 2025
Myoclonus-dystonia syndrome (MDS) is a genetic movement disorder with childhood-onset, most frequently caused by SGCE defects. For this survey two …read more »
The Importance of Newborn Screening for Metachromatic Leukodystrophy (MLD)
April 7, 2025
MLD is a neurodegenerative disorder, that affects children at a very young age, leading to a premature death. In a …read more »

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Der Code des Lebens @dercodedeslebens.bsky.social 3 days

📣 Neue Folge: Von Basenpaaren und Bytes
Das menschliche Genom hat 3 Milliarden Basenpaare – eine riesige Datenflut, die nur mit Bioinformatik zu bewältigen ist. Camill Kaipf erklärt, wie man in dieses Feld kommt und warum eine sichere IT-Infrastruktur so wichtig ist.
🎧 t1p.de/xebt4
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The German Human Genome-Phenome Archive @ghga.bsky.social 1 week

🎬 In case you missed our webinar on Benchmarking and quality control for genomic variant calling with Johannes Köster., you can now watch the recordings on our Training Website: www.ghga.de/resources/tr...
The slides are also available on GHGA GitHub: github.com/GHGA-Trainin...
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ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social 2 weeks

Erksplain - Kidney Transplantation 🚨

Kidney transplants save lives — but the average wait is 6–8 years.
Deceased donors are matched by urgency and compatibility.
Most people can donate — just register or tell your family! 💡

Organ donation = a true gift of life. 🌍

#KidneyTransplant #SaveLives
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ERN-RND @ern-rnd.bsky.social 2 weeks

💻 U#webinar#webinar on “Recent Advances in Clinical Trials in Multiple System Atrophy”
📅 20th May, 3:00 CEST
🗣️ David Bendetowicz, University Hospital Bordeaux, France
Sign https://t1p.de/ri7k3de/ri7k3
Joint with the European Reference Network for Rare Neuromuscular Diseases and
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ERN-RND @ern-rnd.bsky.social 2 weeks

💻 U#webinar#webinar on “Neurogeriatric Aspects in Rare Forms of Ataxia and HSP”
📅 13th May, 3:00 CEST
🗣️ Eleni Zamba-Papanicolaou, Cyprus Institute of Neurology and Genetics
Sign https://t1p.de/v8r2hde/v8r2h
Joint with the European Reference Network for Rare Neuromuscular Diseases and