Newborn Screening StudyAre 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...
Scoping Study with Genetic AllianceWe are working in collaboration with Genetic Alliance to carry out a Scoping Study. The aim of the scoping study is to investigate the...
Childhood Cerebral Adrenoleukodystrophy (CCALD) Research StudyResearchers from Sheffield Hallam University are conducting research in collaboration with Alex TLC to understand parents’ experiences of...
New Born Screening for ALD Round TableAt Alex TLC's Digital Community Weekend in November 2021 there was a New Born Screening for Adrenoleukodystrophy (ALD) Round Table. This...
Important : Newborn Screening Consultation OutcomeAt the beginning of January 2021, we completed a public consultation to have ALD added to the UK Newborn Screening Programme. There were...
Matt Hancock's personal mission to drive the expansion of Newborn ScreeningAlex TLC are proud to be part of the group of patient organisations campaigning to expand the newborn screening programme, and we welcome...
We have hit our 10K Signature TargetThe UK National Screening Committee advises the Government on screening. It continually reviews the evidence for screening for...
APPG Meeting - Newborn Screening- 9th June 2021On Wednesday 9th June, the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions held a meeting on newborn screen
South East Today - BBC News - ALD Newborn Screening CampaignOn Monday 10th May our story was featured on BBC South East News.
Leader's Questions 20.05.21Caroline Ansell is the Member of Parliament for Eastbourne & Willingdon, raised the heart-breaking case of 11 year old Alfie from...
Never ForgottenTo all those who have fallen to leukodystrophy... Never Forgotten Please support our cause and sign the petition
Scots grandad living with ultra rare incurable disease says everyone should be tested at birthMichael Conway suffers from Adrenoleukodystrophy (ALD) - a life-limiting neurological condition which affects 1 in 20,000 men in the UK....
CALL FOR PARTICIPANTS. Exploring family communication following adrenoleukodystrophy diagnosisJonathan Wells (MSc Genetic and Genomic Counselling Student) from Cardiff University discusses his research project ‘Exploring family...
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...
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...
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.
Alex TLC patron, Britt Ekland, describes the agony of finding out her grandson has ALDLucas was diagnosed with adrenoleukodystrophy (ALD) at birth through the US Newborn Screening Programme.
Newborn Screening UpdateAlex TLC Community Weekend 2020 Presentation : Dr Stephan Kemp, Associate Professor, Amsterdam University Medical Centers.
UK Newborn Screening Patient CharterThe UK is far behind most European countries for how many conditions are screened for at birth using the heel prick test. Genetic...