- Holm Graessner at the Brain Innovation Days 2025
Our coordinator Holm Graessner is participating in the Brain Innovation Days’ Platinum Panel “Advancing Adaptive Pathways and Real-World Evidence for … Continue reading “Holm Graessner at the Brain Innovation Days 2025” - Annual Meeting 2025 /Scientific Symposium
We are happy to announce that the ERN-RND annual meeting 2025 will be in the Tutzing Castle (close to Munich) … Continue reading “Annual Meeting 2025 /Scientific Symposium” - Treatabolome for Dominant Ataxias – Interview David Gomez
For some rare paediatric ataxias treatments do exist, but unfortunately they are not always well-known. In oder to accelerate diagnosis … Continue reading “Treatabolome for Dominant Ataxias – Interview David Gomez” - 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” - 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 “Holm Graessner becomes Lancet Commissioner” - 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 “Meeting with MEPs for Rare Disease Day” - 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 “ERN-RND now on BlueSky!” - NGS: European Quality Assessment for ERN-RND centersWhy is a quality assessment on European level important for next generation seuencing (NGS)? What needs to be improved and … Continue reading “NGS: European Quality Assessment for ERN-RND centers”
- 6th ERN-RND Winter School
The European Pediatric Neurology Society (EPNS) and the European Reference Network for Rare Neurological Diseases (ERN-RND) are organizing a Winter … Continue reading “6th ERN-RND Winter School” - New Study on MLDThe combination of newborn screening, care pathway and respective therapies led to a major breakthrough for rare diseases in this … Continue reading “New Study on MLD”
- Our Patient Journeys at EURORDIS Podcast “ERNs on Air”
Patient Journeys are practical quick overviews that guide you through the stages of a rare neurological disease. But do you … Continue reading “Our Patient Journeys at EURORDIS Podcast “ERNs on Air”” - Agenda for Annual Meeting 2024
It is still possible to register to our ERN-RND annual meeting Care-RND24! - Annual Meeting 2024
on 10-11 October 2024 in Ljubljana, Slovenia. - 100th ERN-RND Webinar!
We are happy to announce that our 100th webinar on rare neurological diseases will be held tomorrow at 15 CEST … Continue reading “100th ERN-RND Webinar!” - EAN 2024: Come and visit us!
We are looking forward to meeting you at this year’s EAN Congress: come and visit us at our booth N27 … Continue reading “EAN 2024: Come and visit us!” - Recordings of ERN-RND Spring School 2024 online
If you missed a session of our Spring School “DBS in Dystonia” you can now watch it online. The following … Continue reading “Recordings of ERN-RND Spring School 2024 online” - New Publication on NGS for RND
Read now our newly published paper on “Quality assurance for next-generation sequencing diagnostics of rare neurological diseases in the European … Continue reading “New Publication on NGS for RND” - The ERN-RND ePAG visits the Medical University Innsbruck
“Getting coordinated care is not a pipe-dream. It is a reality in Innsbruck and can be a reality in other … Continue reading “The ERN-RND ePAG visits the Medical University Innsbruck” - ERN-RND Spring School 2024Our 5th Winter School will be a Spring School this year and will focus on Deep Brain Stimulation in Dystonia. … Continue reading “ERN-RND Spring School 2024”
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ERN-RND | European Reference Network on Rare Neurological Diseases
for rare or low prevalence complex diseases