Newborn ALD Screening Study
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.
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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.
ALD Connect 2022 Annual Meeting and Patient Learning Academy ALD Connect are holding their 2022 Annual Meeting and Patient Learning Academy on Friday 11th, and Saturday 12th November!
Resource for patients and families residing outside of the US Bluebird Bio have created a short resource that aims to answer questions about bluebird’s gene therapies for patients and families residing outside of the US.
Raising Awareness this Leukodystrophy Awareness Month 💙 A community member’s story has been featured in the Daily Record. Michael has ALD and is trying to raise awareness of the condition this leukodystrophy awareness month. He hopes to make others aware of leukodystrophy and 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.
of any doctors in Cyprus with a good knowledge of ALD? Are you or a family member affected by Adrenoleukodystrophy (ALD) and are living or lived in Cyprus?