On Wednesday 9th June, the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions held a meeting on newborn screening. The Newborn Screening Alliance is working with Genetic Alliance UK to improve access to newborn screening.

Guest speakers at the meeting include:

• Professor Simon Heales, Great Ormond Street Hospital

• Professor Laurent Servais, UK Newborn Screening Alliance

• Dr Will Evans, Niemann-Pick UK

• Amanda Mortensen, Batten Disease Family Association

• Karen Harrison, Alex The Leukodystrophy Charity

• Georgina Morton, ArchAngel MLD Trust