3rd international congress on newborn screening for MLD

The 3rd MLD Alliance international congress on newborn screening for metachromatic leukodystrophy (MLD) was held in Florence on November 3^rd and 4^th 2022. It brought together some sixty clinicians, scientists, industry and patient association representatives.

The 1^st day, some specific workshops were organized. Scientists shared information about the ongoing newborn screening studies for metachromatic leukodystrophy, and relevant data. Clinicians provided an update on methods of diagnosis, epidemiology of the disease, ethics, and information and communication to patients.
Families representing patient associations shared their experiences and their needs for psychological support and information. They thought about actions to be taken.

The second day was a plenary session and brought together all participants to share the outcome of the work of each group work.

A spokesperson from each workshop summarized the previous day’s discussions.

This collegial work gave the opportunity to expose the different approaches of newborn screening in the world and to initiate interdisciplinary collaborations to move towards new standards for the tests, and a common approach with the objective of accelerating the newborn screening for metachromatic leukodystrophy.