September is Newborn Screening Awareness Month 👣
We are campaigning for Adrenoleukodystrophy (ALD) to be added to the newborn screening programme 💙
Although our application to the Newborn Screening Consultation was previously unsuccessful, we continue to implement projects to gather evidence to support our next application. This includes a study in collaboration with Sheffield Hallam University to find out ‘The psychosocial impact on parents of having a child diagnosed with Childhood Cerebral Adrenoleukodystrophy (CCALD)’. More recently we are working in collaboration with Genetic Alliance to carry out a Scoping Study to capture attitudes and opinions about whether X-ALD should be included as part of the newborn screening programme.
You can find out more about our Screen Our Boys Campaign by following the link: https://www.screenourboys.org/