On 23 July 2019, Genetic Alliance UK published their newborn screening patient charteropens PDF file , 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:
- Nick Meade, Director of Policy at Genetic Alliance UK
- Dr Rachel Carling, Director of Newborn Screening and Clinical Lead Biochemical Sciences at Viapath, Guys & St Thomas’ Hospital
- Dr Stuart Adams, Joint Trust Lead Healthcare Scientist at Great Ormond Street Hospital
The detailed minutes for the meeting can be accessed below.