Adam Clatworthy

Adam is a passionate rare disease advocate, driven by his children Alfie and Lola, who were born with the rare genetic condition CRELD1 and participants in the 100,000 Genomes Project.

As Vice-Chair for Rare Conditions on the Participant Panel, Adam represents the interests of Genomics England participants, ensuring that genomics research is understood and directly benefits the patient and participant community.

With 20 years of PR and communications experience, Adam offers a unique perspective, combining the lived experience of a parent caring for children with a rare form of epilepsy, with the expertise to communicate complex topics to diverse audiences.

Adam and his wife Jess founded the charity CRELD1 Warriors, supporting families and driving research in the hope of finding a treatment.