The campaign is pushing for important changes to the structure and processes of the National Screening Committee and the addition of further appropriate metabolic disorders to our screening programme, in order to align the UK with other high-income countries.
The campaign has been endorsed by the Pompe Support Network and other key rare disease organisations and clinicians, as well as over 70 cross-party MPs, and has successfully secured a dedicated debate with Health Secretary Matt Hancock.
Pompe Support Network is an integral part of a newly formed newborn screening review working group and, despite the intervention of Covid-19, we continue to prepare a robust argument to present at the appropriate time.
The voice of the patient community is vital to this and we urge all supporters to sign the petition, which can be found at https://www.nickieaiken.org.uk... or https://www.archangel.org.uk
