Giles Lomax

CEO, Spinal Muscular Atrophy UK

Giles Lomax

As CEO for SMA UK I will drive our mission forwards ensuring we work tirelessly to raise awareness of SMA, be a leading advocate for individuals and families and ensuring timely access to diagnosis, effective treatment and best management for all affected by SMA. Newborn screening for SMA is one of our top priorities and we will continue our advocacy work with the UK Newborn Screening Alliance so that we do all we can to ensure the UK Newborn Screening Committee include SMA in the heel prick test for newborns across the whole of the UK. I bring a deep understanding of the physical and emotional impact on people who are living with SMA, being a father of twins who have SMA type 2.

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 three wishes for the future of rare disease are: to raise awareness of the importance of Newborn screening for rare diseases; live in a world where the impact of rare diseases are managed with effective treatment, care packages and individuals are socially included; and ensure timely diagnosis with effective and informative support and education around the individual and family.