Lucy McKay

CEO, Medics4RareDiseases

Lucy McKay discussing Newborn Screening at Rarefest22

Lucy McKay is a UK trained doctor and the CEO of Medics4RareDiseases. Lucy’s brother died before she was born from a rare condition. She grew up alongside a patient group, founded by her mum, that started life in Lucy’s family home. Medics4RareDiseases is equipping medical students and medical professionals with knowledge and practical tools required to reduce the diagnostic odyssey and improve the rare patient experience. Lucy’s role of CEO combines her unique personal experiences with her medical training in order to improve the lives of those living with rare diseases.

Breakout session: The NHS Newborn Screening Programme - what is it and how is it evolving?

The NHS newborn blood spot (NBS) screening programme. What are the aims? Who ‘s screened? For which diseases? How do we ensure fair and equal access? What difference can early diagnosis make? Is it enough? What next? Come and find out and take part in the discussion in this breakout session open to all.

My wishes for the future of rare disease are that I would like to see the de-stigmatising of rare and genetic conditions and a broad and basic understanding of the challenges of living with rare disease in the public and NHS.