News - Newborn hearing screening

Here are the latest news stories from Alex TLC and about topics we think you'll find useful.

England Rare Diseases Action Plan 2022

March 2022

Decisions on newborn screening Alex TLC are part of the Newborn Screening Collaborative calling for revisions to the National Screening Committee processes which will help in our campaign to add ALD to the UK newborn screening programme. It is wonderful to see that there are specific measures in the Rare Disease Action Plan published towards this Action 1: improving how decisions are made on newborn screening for rare diseases In the year ahead this will be actioned through: • a new UK NSC with a broader remit, revised terms of reference, and greater collaboration with researchers and stakeholders, including those with an interest in rare disease

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New Born Screening for Adrenoleukodystrophy – UK NSC decision announced

April 2017

The National Screening Committee have said no to ALD Life’s proposal to add ALD to the list of conditions screened for at birth. Naturally, this is a very disappointing result, but it does mean that ALD is on their radar and will come up for review again in 2019. Working with UK ALD and AMN specialists, plans are in place to appeal the decision and we will keep you posted on progress. Needless-to-say we will not be giving up!

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