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SCREEN OUR BOYS

Alex TLC Newborn Screening Campaign

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    Newborn Screening Study

    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...
    1 view
    Scoping Study with Genetic Alliance

    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...
    0 views
    Childhood Cerebral Adrenoleukodystrophy (CCALD) Research Study

    Childhood Cerebral Adrenoleukodystrophy (CCALD) Research Study

    Researchers from Sheffield Hallam University are conducting research in collaboration with Alex TLC to understand parents’ experiences of...
    3 views
    New Born Screening for ALD Round Table

    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...
    5 views
    Important : Newborn Screening Consultation Outcome

    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...
    62 views
    Matt Hancock's personal mission to drive the expansion of Newborn Screening

    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...
    8 views
    We have hit our 10K Signature Target

    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...
    12 views
    APPG Meeting - Newborn Screening- 9th June 2021

    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
    45 views
    South East Today - BBC News - ALD Newborn Screening Campaign

    South East Today - BBC News - ALD Newborn Screening Campaign

    On Monday 10th May our story was featured on BBC South East News.
    6 views
    Leader's Questions 20.05.21

    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...
    1 view
    Never Forgotten

    Never Forgotten

    To all those who have fallen to leukodystrophy... Never Forgotten Please support our cause and sign the petition
    11 views
    Scots grandad living with ultra rare incurable disease says everyone should be tested at birth

    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....
    40 views
    CALL FOR PARTICIPANTS. Exploring family communication following adrenoleukodystrophy diagnosis

    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...
    27 views
    ARE YOU AFFECTED BY ALD OR AMN? HELP US NOW AND RESPOND!

    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...
    109 views
    Why is ALD Newborn Screening so very important?

    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...
    25 views
    Why is ALD newborn screening not recommended by the UK National Screening Committee?

    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.
    43 views
    Alex TLC patron, Britt Ekland, describes the agony of finding out her grandson has ALD

    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.
    455 views
    Newborn Screening Update

    Newborn Screening Update

    Alex TLC Community Weekend 2020 Presentation : Dr Stephan Kemp, Associate Professor, Amsterdam University Medical Centers.
    36 views
    UK Newborn Screening Patient Charter

    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...
    24 views
     
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