Claire Whitehill

Claire’s became a participant of the 100,000 Genomes Project in 2016 and her daughter received a diagnosis of OCNDS in 2019. Okur Chung Neuro Development Syndrome is caused by a change on the CSNK2A1 gene and is an ultra rare disorder diagnosed 25 people in the UK and Ireland and 230 globally. Her mum is also a participant of the 100,000 Genomes Project due to having Dilated Cardio Myopathy,

Claire became a member of the CSNK2A1 Foundation Parent Advisory Board shortly afterwards and is also the UK Regional Ambassador for the charity.

She is also a member of the South East Genomics People and Communities Forum.