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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
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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
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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
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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
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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
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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
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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
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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
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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
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ERN-RND | European Reference Network on Rare Neurological Diseases
for rare or low prevalence complex diseases