-
John Gerbild elected as Board Director for EURORDIS
We are happy to announce that our patient advocate John Gerbild (representative for: Ataxia/HSP) is now a newly elected Board… Continue reading
-
Recordings from our Winter School 2025 are now available
Did you miss a session during our winter school Challenges of Treating Rare Neurological Diseases this year? You can now… Continue reading
-
Clinical Practice for Primary Progressive Aphasia (PPA) – Interview with Robert Rusina
It takes „about one year from the first symptoms to the first consultation of a physician, and another one year… Continue reading
-
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
Skip to content
ERN-RND | European Reference Network on Rare Neurological Diseases
for rare or low prevalence complex diseases