Elizabeth Forsythe is a consultant in clinical genetics with a specialist interest in Bardet-Biedl syndrome, ciliopathies and therapies for rare genetic conditions.

Roly Megaw is an academic ophthalmologist with a clinical and research interest in the inherited retinal dystrophies (IRDs), a group of untreatable, monogenic conditions that are the leading cause of visual loss in children and working adults. 

Fiona is a patient advocate for Rare Diseases who was awarded a British Empire Medal for chairing the PCD Support Group and raising awareness of PCD in the 2021 New Year’s Honours.

Kerry has lived experience as her son is diagnosed with AS which is an ultra-rare and complex condition. She is a patient representative on the England Rare Diseases Framework Delivery Group and is co-applicant on various NIHR funded research studies.

I am an operations manager with experience in team management, contract management, publications development and editing, bid writing, service and strategy development and events.