ALD Newborn Screening

“Newborn screening for tyrosinaemia – are we making headway?” Article

This excellent article by Nick Meade (Director of Policy, Genetic Alliance UK) discusses our efforts to get ALD added to the newborn screening programme and whether the recent announcement for tyrosinaemia could be a positive sign for ALD.

“Since the first review of ALD as a candidate for the newborn screening programme in 2017, the Alex TLC database holds records for 29 boys diagnosed with untreatable cerebral ALD, nine of whom have since died. ALD has now been reviewed twice and Alex TLC has spent £80,000 on staff time on the application process and commissioning research to satisfy the UK NSC’s evidential requirements.”

Alex - The Leukodystrophy Charity