The All Party Parliamentary Group on Genetic, Rare and Undiagnosed Conditions will be holding a meeting on Wednesday 22 October 2025, 10:30-12:00 on newborn screening. The APPG will discuss the current newborn screening programme and will be hearing recommendations to improve decision-making from the Genetic Alliance UK Time to Decide report .
This meeting will be an opportunity for Members of Parliament to hear from stakeholders on the need to improve decision-making on newborn screening.
While many countries now screen for over 20 conditions, only nine conditions are included in the UK’s NHS Newborn Blood Spot Screening Programme. There is growing consensus from across the rare community and Genetic Alliance UK’s broader network of stakeholders that this needs to change.
The report explores how the UK National Screening Committee (UK NSC) can accelerate its approach to decision-making for expanding newborn screening, drawing on research findings from 14 countries to identify practical, evidence-informed steps for improving the way decisions are made in the UK.
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The meeting will be hybrid. You can join online via the zoom link provided after registration. You can join to observe the meeting and contribute via the chat.
There are a limited number of spaces available to attend in person. If you are interested in attending in person, please indicate so when registering and we will contact you.
We welcome new members with an interest in the topic to join the meetings online. Pharmaceutical company representatives are welcome to join online.
For more information, you can contact Genetic Alliance UK at appg@geneticalliance.org.uk
if you would like to receive updates about the APPG on Genetic, Rare and Undiagnosed Conditions, please contact us at appg@geneticalliance.org.uk
