ALD has been added to their newborn screening panel
The Alabama Department of Public Health (ADPH) has recently added X-linked Adrenoleukodystrophy (X-ALD) to Alabama’s newborn screening panel. This change demonstrates the vital need for newborn screening for ALD. We will continue to campaign for ALD to be added to the newborn screening programme in the UK
By Sara Hunt, Our CEO
Our CEO, Sara’s, article ‘Why Teddi’s MLD gene therapy story should provoke immediate change for newborn screening’ has been featured in National Health Executive Magazine.
An article by one of our community members
One of our lovely community members, Nick, is affected by AMN which affects his mobility. He has written about his experience going on a Cruise with a disability and he thought it may be helpful for other community members to read his account.
“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.
Available to order
We have created a Children’s Book to support the siblings of children diagnosed with childhood cerebral adrenoleukodystrophy (CCALD). The primary goal is to support children and their families to build emotional resilience, and openness to talk and ask questions about a diagnosis of CCALD.
Our Support Services Manager, Karen, talks to Anglia News
We are very proud of our Support Services Manager, Karen, who was featured on ITV Anglia News on Friday. She shared her story about how ALD has affected her family and discussed the vital need for newborn screening for ALD.