- ePAG visit at Children’s Hospital Sant Joan de Déu, Barcelona
Having a rare disease means spending a lot of time around doctors and hospitals. Places, that even adults will not … Continue reading “ePAG visit at Children’s Hospital Sant Joan de Déu, Barcelona” - Meet us at EAN2025
Are you at this year’s EAN Congress in Helsinki? Then come and visit us at our booth (N21) in the … Continue reading “Meet us at EAN2025” - Review on DBS for Dystonia
Despite considerable achievements in genetics in dystonias, their response to possible treatment such as Deep Brain Stimulation (DBS) remains to … Continue reading “Review on DBS for Dystonia” - 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 “John Gerbild elected as Board Director for EURORDIS” - 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 “Recordings from our Winter School 2025 are now available” - 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 “Clinical Practice for Primary Progressive Aphasia (PPA) – Interview with Robert Rusina” - 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 “Survey on Myoclonus Dystonia Syndrome” - 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 “The Importance of Newborn Screening for Metachromatic Leukodystrophy (MLD)” - 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 “Conference: Towards an EU Action Plan on Rare Diseases” - 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 “Interview: “de neuroloog” with Holm Graessner about the neurological ERNs” - 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 “MEP Meeting on Brain Health and Neurological Conditions” - 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 “Solve-RD: Interview with coordinator Holm Graessner”
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ERN-RND | European Reference Network on Rare Neurological Diseases
for rare or low prevalence complex diseases