The power of the patient advocate – Fiona Copeland

Speaker biography Fiona is a patient advocate for Rare Diseases who was awarded a British Empire Medal for chairing the Primary Ciliary Dyskinesia Support Group (UK) and raising awareness in the 2021 New Year’s Honors. She promotes, chairs and directs a large variety of national committees, groups and advisory boards working to promote knowledge and development of genetic disorders, blindness, cancer support and health research. She has co-written numerous academic papers on PCD and has an excellent record working with the NHS helping to set up new services. She is also a highly effective Project Management Office Manager, working with organizations in...