Kay Parkinson was the mother of two children who were diagnosed with the ultra rare disease Alström Syndrome when they were aged 18 & 15, having had four previous mis-diagnosis. Both children died following heart and heart/kidney transplantations aged 25 and 29 respectively.
She qualified as a lawyer in 1996 as a mature student, specialising in charity law. In 1998 she founded the charity Alström Syndrome UK (ASUK). Kay served as their CEO for 15 years before stepping down in 2013 to start up Alström Europe (AS EU) charity. In 2015 Kay joined the steering group of Cambridge Rare Disease Network as she believes all rare diseases need to work together for better diagnosis, treatments, services and a much needed higher public profile.
From September 2015 Kay has helped formally set up and structure Cambridge Rare Disease Network (CRDN) as their CEO.