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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 com...

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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 opt...

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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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Newborn Screening Update

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

25 views

UK Newborn Screening Patient Charter

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

17 views

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