Invitation to Parliamentary Meeting on Newborn Screening

28 May 2021

On Wednesday 9th June, the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions will be holding 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

You can ask your MP to attend the meeting and show their support for people affected by SMA - ask them to email: to get a link to join the meeting. You can find out more and register to attend the event, here