International Neonatal Screening Day

Find out about our campaign to get ALD added to the newborn screening programme in the UK

Wednesday 28th June is International Neonatal Screening Day. This day highlights the vital need to screen for conditions at birth, including leukodystrophy. We continue to campaign to get ALD added to the newborn screening programme in the UK. To find out more, visit our campaign page: Screen Our Boys

We have worked in collaboration with researchers to conduct research to provide evidence to support the need for ALD to be screened at birth. This included our Psychosocial Impact Study with Sheffield Hallam University and our Newborn Screening Study with Genetic Alliance. We are waiting on the publication of the Psychosocial Impact Study report and will share this once available.The Genetic Alliance summary report is available to view here: NBS Study Report

We will continue to share updates and opportunities for involvement in our campaign.

Alex - The Leukodystrophy Charity