Category: Past Events 2025

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

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.

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/

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.

Registration