Fiona left a successful career in banking following the diagnosis of both her sons with primary ciliary dyskinesia (PCD). She combines running her own project management business with being the chairperson of the PCD Family Support Group, a charity with a membership of 300 patients.

As well as representing the PCD Family Support Group within Ciliopathy Alliance UK, Fiona chairs the patient representatives for the NIHR Biomedical Research Unit at the Royal Brompton Hospital and for chronic suppurative lung diseases. She is also a patient representative for the European Respiratory Society.

Fiona regularly lectures on the subject of ‘living with a genetic condition’ at UCL Medical School, is a member of the Mum’s Panel at Genetic Disorders UK and gives assemblies to schools each year to help raise awareness and funds.

Ciliopathy Alliance

Fiona talks about the Ciliopathy Alliance and how the collaboration between patients, researchers and clinicians, for a variety of rare conditions caused by abnormal cilia, is improving the lives of those affected.