At the beginning of January 2021, we completed a public consultation to have ALD added to the UK Newborn Screening Programme. There were many families within the charity who completed submission statements as part of our application. To support our application, we also started a parliamentary petition which reached 11,840 signatures.
The National Screening Committee have reached their outcome and sadly they have not recommended that ALD is added to the UK Newborn Screening Programme at this time. You can read more about the Newborn Screening Committee’s decision on the Legacy Screening website: https://legacyscreening.phe.org.uk/ald Although this was not the outcome we wanted, it will not stop us from campaigning for this important change.
We want to say a massive thank you to everyone who was involved in submitting statements for the consultation and to everyone who signed the parliamentary petition, we really appreciated your support! #screenourboys #adrenoleukodystrophy