ERN-RND is organising a Scientific Symposium on “European Healthcare for RND Patients” on October 28, which will be held online – participation is free.
Find the programme with abstracts of the talks here.
To register and join please click here.
Category: Past Events 2025
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 Neurohood and have a coffee with us – the ERNs EURO-NMD, epiCARE and EFNA, the European umbrella organisation of neurological patient advocacy groups, will also be there!
Please find below our contributions.
—– SUNDAY 22 June —–
16:25 – 16:55 EEST
ERN-RND: Improving care for rare neurological diseases: The European reference networks
—– MONDAY 23 June —–
16:25 – 16:55 EEST
ERN-RND: Current practices regarding genetic therapies in Europe
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 will give an insight on this at the EESC Conference “Towards an EU Action Plan on Rare Diseases” on April 10, 16:30 CEST.
And our patient advocate Lori Renna Linton will talk about Patient Journeys and how to develop one, at 12:00 CEST.
You can now register for online participation here. Find the programme here.
Find the recordings here. Holm Graessner’s talk starts at 7:46:00, Lori Renna Linton’s talk at 2:35:00.
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 19, 10-12 CET. Join the meeting with the MEP Interest Group Brain Helath & Neurological Conditions together with our coordinator Holm Graessner as panelist.
Big thanks to the European Federation of Neurological Associations (EFNA) for this invitation! To participate on-site or online please register till February 5: https://www.efna.net/mep-february25/
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 School on Challenges of Treating Rare Neurological Diseases.
The school will take place virtually, from 12th to 14th March 2025.
Day 1 Disease Modifying Therapies
Day 2 Movement Disorders
Day 3 Co-morbidities and Cases
Find the programme here.