Jayne Spink

Genetic Alliance UK

e-mail: jayne.spink@geneticalliance.org.uk

Jayne is Chief Executive of Genetic Alliance UK, a national alliance with over 200 member charities. Genetic Alliance UK is home to Rare Disease UK (which Jayne chairs) and SWAN UK which provides support to families who have a child or young person with complex needs and no diagnosis.

Jayne has a BSc and a PhD in Genetics. Following a period of postdoctoral molecular genetics research, she continued her career in central government working on range of genetics related policy areas that included gene therapy clinical research and as scientific secretary to the UK Gene Therapy Advisory Committee. 

Having served as an Associate Director of the Centre for Clinical Practice at England’s HTA body NICE, Jayne moved to the third sector in 2007 to take up the post of Director of Policy and Research with the UK Multiple Sclerosis Society and, immediately prior to joining Genetic Alliance UK, held the post of Chief Executive of the Tuberous Sclerosis Association (UK). Jayne is a member of a number of committees and external groups relating to genetic and rare conditions, including the UK Genomics Board.

Jayne lives in London with her husband and two children. Jayne’s elder child, her son, was diagnosed soon after birth with Ebstein’s Anomaly (which occurs in 1 per 200,000 live births).

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases