England Rare Diseases Action Plan 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
