Newborn ALD Screening Study: Summary Report
Our study involved both a survey and individual interviews to capture attitudes and opinions about whether ALD should be included as part...
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Newborn Screening for ALD in Taiwan
Below is a research summary we produced regarding an article which explored newborn screening for ALD in Taiwan. The study demonstrated a...
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Sex-specific newborn screening for X-Linked adrenoleukodystrophy in the Netherlands
Recently the results from a study 'Sex-specific newborn screening for X-Linked adrenoleukodystrophy' (Monique Albersen, et al, 2022) in...
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Newborn Screening Study
Are you a man aged 16 and over affected by ALD/AMN? Or their family member/carer? Complete our survey and let us know your thoughts about...
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Scoping Study with Genetic Alliance
We are working in collaboration with Genetic Alliance to carry out a Scoping Study. The aim of the scoping study is to investigate the...
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Childhood Cerebral Adrenoleukodystrophy (CCALD) Research Study
Researchers from Sheffield Hallam University are conducting research in collaboration with Alex TLC to understand parents’ experiences of...
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New Born Screening for ALD Round Table
At Alex TLC's Digital Community Weekend in November 2021 there was a New Born Screening for Adrenoleukodystrophy (ALD) Round Table. This...
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Important : Newborn Screening Consultation Outcome
At the beginning of January 2021, we completed a public consultation to have ALD added to the UK Newborn Screening Programme. There were...
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Matt Hancock's personal mission to drive the expansion of Newborn Screening
Alex TLC are proud to be part of the group of patient organisations campaigning to expand the newborn screening programme, and we welcome...
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We have hit our 10K Signature Target
The UK National Screening Committee advises the Government on screening. It continually reviews the evidence for screening for...
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APPG Meeting - Newborn Screening- 9th June 2021
On Wednesday 9th June, the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions held a meeting on newborn screen
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South East Today - BBC News - ALD Newborn Screening Campaign
On Monday 10th May our story was featured on BBC South East News.
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Leader's Questions 20.05.21
Caroline Ansell is the Member of Parliament for Eastbourne & Willingdon, raised the heart-breaking case of 11 year old Alfie from...
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Never Forgotten
To all those who have fallen to leukodystrophy... Never Forgotten Please support our cause and sign the petition
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Scots grandad living with ultra rare incurable disease says everyone should be tested at birth
Michael Conway suffers from Adrenoleukodystrophy (ALD) - a life-limiting neurological condition which affects 1 in 20,000 men in the UK....
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CALL FOR PARTICIPANTS. Exploring family communication following adrenoleukodystrophy diagnosis
Jonathan Wells (MSc Genetic and Genomic Counselling Student) from Cardiff University discusses his research project ‘Exploring family...
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ARE YOU AFFECTED BY ALD OR AMN? HELP US NOW AND RESPOND!
The National Screening Committee is holding a consultation around their decision not to screen for ALD in the UK, which closes on January...
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Why is ALD Newborn Screening so very important?
Screening for ALD at birth could save the lives of those identified with ALD, identify wider family members who are at risk and allow...
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Why is ALD newborn screening not recommended by the UK National Screening Committee?
ALD specialists and researchers worldwide contest this opinion. There are many papers written on the efficacy of the screening test for ALD.
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Alex TLC patron, Britt Ekland, describes the agony of finding out her grandson has ALD
Lucas was diagnosed with adrenoleukodystrophy (ALD) at birth through the US Newborn Screening Programme.
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Updates: Blog2
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