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 Orphan Drugs” on October 15th, 11:55 CEST.

This session will explore how adaptive pathways and Real-World Evidence (RWE), including patient-experienced data, can be more effectively integrated into policy frameworks to improve access to innovative treatments for rare brain disorders. With patients often facing long delays and limited options, there is a growing need to rethink how we evaluate and approve therapies. In partnership with Merck KGaA Healthcare, this session will bring together stakeholders from across the healthcare ecosystem and aims to identify collaborative, patient-centred policy solutions that accelerate access while ensuring long-term sustainability and equity.

Find the whole programme here.

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.

Registration