Nick Meade

Director of Policy, Genetic Alliance UK

Nick Meade

I’m Director of Policy at Genetic Alliance UK, the national charity for everyone living with rare, genetic and undiagnosed conditions.
Nick has worked at Genetic Alliance UK for more than 15 years. Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare, and undiagnosed conditions in the UK. The members and the people they support are at the heart of everything the organisation does. Genetic Alliance UK advocates for fast and accurate diagnosis, good quality care and access to the best treatments; actively supports progress in research and engages with decision makers and the public about the challenges faced by our community. Nick co-chairs Genomics England’s working group on returning results for the newborn genomes programme.

Breakout Session: The NHS Newborn Screening Programme. What is is it and how is it evolving?

Nick joins a collection of advocates to explore the NHS Newborn Screening Programme.  What are the aims?  Who is screened?  For which diseases?  How do we ensure fair and equitable access?  What difference can early diagnosis make?  Is it enough?  And what next?

My wish for rare diseases:

I want to see genuine continuity for the UK Rare Disease Framework with a leap forward in newborn screening for the UK.