The UK National Screening Committee (UK NSC) blood spot task group (BSTG) wants to recruit 2 patient and public voice (PPV) representatives to support one of its core projects.
The BSTG aims to identify approaches that could help the UK NSC make robust screening recommendations on rare diseases when good quality evidence is often limited.
One of its core projects is focused on the challenges, opportunities and practical approaches of developing modelling for rare diseases in newborn blood spot (NBS) settings.
It is now looking for 2 PPVs who are interested in newborn screening to support this project. The PPVs can be members of the rare disease community who have an interest in shaping the newborn screening policy-making process. For example, they could be a parent of a baby affected by a rare disease or a member of an advocacy group.
Read the UK NSC blood spot task group project: PPVs required news story for full details of what this role involves and how to apply.
The deadline for applications is 10am on Monday 25 September 2023. Please email screeninginformation@dhsc.gov.uk if you have any queries.
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