-
Survey on Myoclonus Dystonia Syndrome
Myoclonus-dystonia syndrome (MDS) is a genetic movement disorder with childhood-onset, most frequently caused by SGCE defects. For this survey two… Continue reading
-
The Importance of Newborn Screening for Metachromatic Leukodystrophy (MLD)
MLD is a neurodegenerative disorder, that affects children at a very young age, leading to a premature death. In a… Continue reading
-
Conference: Towards an EU Action Plan on Rare Diseases
What is the use of Patient Registries? And how does data sharing in the ERNs work? Our coordinator Holm Graessner… Continue reading
-
Interview: “de neuroloog” with Holm Graessner about the neurological ERNs
What do centres of expertise gain from participating in an ERN?Graessner: An immediate advantage is when doctors at such a… Continue reading
-
MEP Meeting on Brain Health and Neurological Conditions
“Does current policy meet the needs of the rare neurology community” and “The impact of rare neurological conditions, through the… Continue reading
-
Solve-RD: Interview with coordinator Holm Graessner
Within the Solve-RD project, over 300 experts from different European countries and Canada re-analysed genome data from undiagnosed 6447 patients.… Continue reading
-
Holm Graessner becomes Lancet Commissioner
Our coordinator Holm Graessner is now commissioner for the freshly launched Rare Diseases International Lancet Commission on Rare Diseases (RDI-LCRD)!… Continue reading
-
Meeting with MEPs for Rare Disease Day
Rare Disease Day is coming up! Join us for shaping the future on policy for Rare Neurological Diseases on February… Continue reading
-
ERN-RND now on BlueSky!
You can now find us on BlueSky: @ern-rnd.bsky.social Did you know that BlueSky was conceptualized in 2019 by former Twitter CEO… Continue reading
Skip to content
ERN-RND | European Reference Network on Rare Neurological Diseases
for rare or low prevalence complex diseases