The Generation Study - article raising concerns
Genome profiling at birth - is this the future we want for our children? An interesting article raising concerns about the Generation...
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Gene therapy for CCALD is not available to treat children in Europe due to dispute
Skysona is BlueBird Bio’s gene therapy treatment for childhood cerebral Adrenoleukodystrophy (CCALD). This article discusses the decision...
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ALD and MLD to be conditions included in the Generation Study
We have some promising news we wanted to share. Adrenoleukodystrophy (ALD) and Metachromatic Leukodystrophy (MLD) are going to be...
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Dutch ALD newborn screening
From 1st October Dutch ALD Newborn screening is going nationwide. This is a promising development in the Netherlands. To find out more:...
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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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Updates: Blog2
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