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...

We are working in collaboration with Genetic Alliance to carry out a Scoping Study. The aim of the scoping study is to investigate the...

Researchers from Sheffield Hallam University are conducting research in collaboration with Alex TLC to understand parents’ experiences of...

At Alex TLC's Digital Community Weekend in November 2021 there was a New Born Screening for Adrenoleukodystrophy (ALD) Round Table. This...

At the beginning of January 2021, we completed a public consultation to have ALD added to the UK Newborn Screening Programme. There were...

Alex TLC are proud to be part of the group of patient organisations campaigning to expand the newborn screening programme, and we welcome...

The UK National Screening Committee advises the Government on screening. It continually reviews the evidence for screening for...

On Wednesday 9th June, the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions held a meeting on newborn screen

On Monday 10th May our story was featured on BBC South East News.

Caroline Ansell is the Member of Parliament for Eastbourne & Willingdon, raised the heart-breaking case of 11 year old Alfie from...

To all those who have fallen to leukodystrophy... Never Forgotten Please support our cause and sign the petition

Michael Conway suffers from Adrenoleukodystrophy (ALD) - a life-limiting neurological condition which affects 1 in 20,000 men in the UK....

Jonathan Wells (MSc Genetic and Genomic Counselling Student) from Cardiff University discusses his research project ‘Exploring family...

The National Screening Committee is holding a consultation around their decision not to screen for ALD in the UK, which closes on January...

Screening for ALD at birth could save the lives of those identified with ALD, identify wider family members who are at risk and allow...

ALD specialists and researchers worldwide contest this opinion. There are many papers written on the efficacy of the screening test for ALD.

Lucas was diagnosed with adrenoleukodystrophy (ALD) at birth through the US Newborn Screening Programme.

Alex TLC Community Weekend 2020 Presentation : Dr Stephan Kemp, Associate Professor, Amsterdam University Medical Centers.

The UK is far behind most European countries for how many conditions are screened for at birth using the heel prick test. Genetic...