Newborn Screening Article
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.
Here are the latest news stories from Alex TLC and about topics we think you'll find useful.
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.
“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.
Summary Report Available to View Our study involved both a survey and individual interviews to capture attitudes and opinions about whether ALD should be included as part of the newborn screening programme.
NHS genomics developments give hope to critically ill newborn babies and children but do not address urgent need for newborn screening for leukodystrophy In response to the recent news this week of the launch of NHS England’s first ever strategy for genomics we wanted to provide information to help make sense of the announcement in terms for what it means for our community.
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.
On this day we raised awareness of our efforts to get ALD added to the UK newborn screening programme on our social media channels. See our posts below: