Fiona Copeland is chair of the Primary Ciliary Dyskinesia (PCD) Family Support Group, a small organisation with a membership of 300 patients, as well as being mum to two adult sons with PCD.

As part of this voluntary role, Fiona is also:

  • an active member of the Genetic Interest Group and Rare Disease UK
  • a patient representative for the Biomedical Research Unit at the Royal Brompton Hospital, the European Respiratory Society, BRONCH-UK and Genetic Disorders UK
  • patient adviser for the NIHR Health Technology Assessment Programme, University of Southampton.

Fiona is a regular speaker on living with a genetic condition, at UCL Medical School.

Making the case for service funding to NHS England

Fiona Copeland speaks about how a collaboration between clinicians and the PCD Family Support Group led to the funding of ‘cradle to rocking chair’ services for patients with primary ciliary dyskinesia in NHS England.

Listen to presentation