- MEP Meeting on Brain Health and Neurological Conditions“Knowledge and awareness are crucial in recognizing neurological conditions” as they often are invisible, even to doctors – this was … Continue reading “MEP Meeting on Brain Health and Neurological Conditions”
- Solve-RD: Interview with coordinator Holm GraessnerWithin 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 CommissionerOur 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 DayRare 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 SchoolThe 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 2025We 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!”
- 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!”