Face-to-face meeting 2023

29 September 2023

Moving the MLD field forward: academic preparations for therapeutic access

On September 28 and 29, the research meeting on MLD took place in Amsterdam, organized by the Amsterdam Leukodystrophy Center and funded by the European Joint Program – Rare Diseases. About 30 doctors, researchers and patient representatives from 12 countries met at the Emma Children’s Hospital.

The program focused on advancing the MLD field in terms of treatments, access to treatments, understanding the disease, and neonatal screening. We also discussed what you can learn from other rare disease fields and how difficult it is for doctors and patients in Eastern Europe, for example, to find the right information about MLD. The meeting was valuable for sharing knowledge about the latest scientific insights and setting up new collaborations to improve care for MLD patients.

We thank all attendees and speakers who actively participated in this meeting. We would also like to thank the EJP-RD for making this meeting possible.

Meeting report

The minutes of the MLDi face-to-face meeting are added below.