The Archangel Newborn Screening Review: Back Our Campaign

The Archangel Newborn Screening Review

We urgently need to expand our newborn screening programme in the UK so that our babies are tested and treated early for rare and severe diseases. Our babies are only tested for 9 diseases lagging behind countries such as Poland, Hungary, Portugal, Italy and America. We must do right by our children and bring our screening programme in line with these countries as soon as possible.

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Archangel Newborn Screening Review: Show your support and sign the petition

We, the undersigned, support the Archangel Newborn Screening Review and call for an immediate extension of the UK's newborn screening programme

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News

Nickie Aiken MP highlights newborn screening programme with Health Secretary Matt Hancock

Tuesday, 8 June, 2021

Member of Parliament for the Cities of London & Westminster, Nickie Aiken, today raised concerns about the lack of testing undertaken in children through the newborn screening programme. Currently, the UK only tests for 9 rare diseases, whilst Iceland tests for 49 and Italy 47.

Aiken highlights need for screening review at PMQs

Thursday, 12 March, 2020

Member of Parliament for the Cities of London and Westminster, Nickie Aiken, asked her first question at Prime Minister’s Questions yesterday.

UK babies at bottom of pile for screening of rare and severe diseases

Friday, 28 February, 2020

UK babies at bottom of pile for screening of rare and severe diseases Thousands of babies at risk of severe disability or even death UK behind Poland, Hungary and Slovakia New MP and coalition campaigning for rapid expansion and overhaul of screening programme Thousands of babies in the UK a

The Archangel MLD Trust

Archangel MLD Trust

ArchAngel MLD Trust is a registered charity, formed when a little girl called Ava received ground-breaking gene therapy for the rare terminal illness Metachromatic Leukodystrophy (MLD). The Trust offers financial support to UK MLD families and is working on having all babies tested at birth for this condition, since the success of remarkable new medicines like gene therapy often depends upon early intervention.

Despite tireless work by a number of dedicated patient organisations and clinical experts representing other serious conditions, few changes have been made to the UK newborn screening programme since its inception in 1965. The system is out of step with medical advances and many other countries, and now requires urgent review.

ArchAngel is delighted to have joined forces with Nickie Aiken MP to campaign for new newborn screening legislation, not just for MLD but for all rare diseases where viable treatment exists.

You can find out more by visiting their website.