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

9 February 2022 | EJPRD- ERICA Joint Workshop “Finding RD registry data in the Virtual Platform”

Continue reading “9 February 2022 | EJPRD- ERICA Joint Workshop “Finding RD registry data in the Virtual Platform””

Publication: “Therapy Trial Design in Vanishing White Matter – An Expert Consortium Opinion”

Continue reading “Publication: “Therapy Trial Design in Vanishing White Matter – An Expert Consortium Opinion””

8 February 2022 | EURORDIS Black Pearl Award Event

Continue reading “8 February 2022 | EURORDIS Black Pearl Award Event”

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

Continue reading

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

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

Continue reading “EURORDIS Photo Award”

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””

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””

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?””

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”

Find us on Bluesky

Get to this post

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

Today we were at the “100 Years of Metachromatic Leukodystrophy” #conference in Tübingen.
In our workshop on the MLD Patient Journey, we received great feedback from patient representatives, organizations, and clinicians—and several patient reps even want to join us in co-creating journeys for MLD.
Get to this post

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

💻 Upcoming #webinar on “The importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders”
📅 9th December, 3:00 CET
🗣️ Maria Judit Molnar, Semmelweis University, Budapest, Hungary

Sign up 👉https://t1p.de/d825https://t1p.de/d825htps://bsky.app/hashtag/webinar">#webinar and
Get to this post

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

💻 Upcoming #webinar on “Recent Advances in Episodic Ataxias”
📅 18th November, 3:00 CET
🗣️ E. Indelicato and D. Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA
Sign up 👉 https://t1p.de/6uunhttps://t1p.de/6uunpps://bsky.app/hashtag/webinar">#webinar and
Get to this post

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

Stay informed: Whether you’re a clinician, patient, carer, or patient representative, our ERN-RND #newsletter is your go-to source for the latest updates on Rare Neurological Diseases in Europe: www.ern-rnd.eu?mailpoet_rou...

#RareDisease #RareNeurologicalDisease #Neurology #RareNeurology
Get to this post

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

💻 Upcoming #webinar on “Fluid Biomarkers in Frontotemporal Dementia”
📅 2nd December, 3:00 CET
🗣️ Domenico Plantone, AOU - University Hospital Siena, Italy

Sign up 👉https://t1p.de/9hsbhttps://t1p.de/9hsbctps://bsky.app/hashtag/webinar">#webinar and
Get to this post

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

💻#webinar on “Guidelines on the Assessment and Treatment of Neurogenic Urinary and Sexual Symptoms”
📅25th November, 3 CET
🗣️A. Fanciulli and P. Guaraldi, Medical University Innsbruck and Azienda USL di Bologna
Sign up 👉 https://t1p.de/9chttps://t1p.de/9cxi7app/hashtag/webinar">#webinart with the and
Get to this post

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

💻 Upcoming #webinar on “Recent Advances in Episodic Ataxias”
📅 18th November, 3:00 CET
🗣️ E. Indelicato and D. Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA
Sign up 👉 https://t1p.de/6uunhttps://t1p.de/6uunpps://bsky.app/hashtag/webinar">#webinar and