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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 »
Conference: Towards an EU Action Plan on Rare Diseases
March 27, 2025
What is the use of Patient Registries? And how does data sharing in the ERNs work? Our coordinator Holm Graessner …read more »

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

💻 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 3 days

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

"I remember the case of a young child, suffering from an unclear dystonic movement disorder, which already had been gone through a long journey of doctor visits, but the answer was still unclear", so neuroradiologist Eva Bueltmann.
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VASCERN | European Reference Network @vascern.bsky.social 2 weeks

Planning for #pregnancy with a vascular anomaly (VA)? You don’t have to navigate it alone.

Our new patient-friendly booklet covers everything from #contraception to delivery written for people living with a VA such as AVMs, PROS, venous malformations, and more.

📘 Download here ➡️ bit.ly/4jDwqwB
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ERN-RND @ern-rnd.bsky.social 3 months

How much do you know about #CervicalDystonia? #RareDisease, neurological... but do you know how everyday life looks like for people living with a rare disease? Watch Lily's journey as her disease progresses in our short movie - based on real experience: www.ern-rnd.eu/disease-know...

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