On 23 July 2019, Genetic Alliance UK published their newborn screening patient charter, which lays out recommendations for how to improve the UK’s newborn screening programme.
The APPG on Rare, Genetic and Undiagnosed Conditions, Chaired by Lord Turnberg and Catherine West MP, met to discuss the charter and what the future holds for newborn screening in the UK.
The meeting spurred interesting discussions around how the recommendations from the charter could be implemented and what impact this would have on rare, genetic and undiagnosed conditions in the UK. Guest speakers included:
The detailed minutes for the meeting can be accessed below.