Rebecca Middleton
Vice Chair for Rare ConditionsRebecca joined the Genomics England’s 100,000 Genomes Project in 2015, and now sits as Vice Chair of the Participant Panel.
As a PR and Communications Director with over 20 years of international experience, Rebecca brings her strategic view and experience to the panel, as well as her personal story and lived experience as an adult rare disease patient.
Having lost family to brain aneurysms, and having undergone surgery for an aneurysm herself, Rebecca recently founded Hereditary Brain Aneurysm Support (HBA Support) and is establishing a patient centred organisation to support patients and families living with familial brain aneurysm syndrome, raising awareness of the condition as a rare disease and representing the patient experience.
