- 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 centers
Why 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” - Annual Meeting 2025
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” - 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”” - 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!”
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ERN-RND | European Reference Network on Rare Neurological Diseases
for rare or low prevalence complex diseases