Although Kay Parkinson is officially retired, she volunteers at the Rare Disease Nurse Network where she is the Founder and […]
Peter Coleman is an independent researcher and full-time carer with a background in sound, TV, film and special effects. Both […]
Daisy Ireland is a Content and Event Producer at Front Line Genomics. Ireland not only has a background in Molecular […]
Caroline Presho is a mother, motivational speaker and Director of the online platform, BRCA Umbrella. After testing positive for a […]
Sarah Winckless is a former British rower, Bronze Olympic Medallist and the first woman to umpire the men’s Boat Race. […]
David Edward Rose works for a rare disease magazine called Rare Revolution Magazine. He is also an ultra-rare disease patient […]
Vaila Morrison is an architect focused on sustainable and inclusive design as well as a mother to a child with […]
Dominique Goodson is a sickle cell warrior, advocate and president of the online platform, SCDForum. After being diagnosed with sickle […]
Maddie Stoodley is a rare disease patient and Gaucher’s Association Ambassador and UK board member. Stoodley was diagnosed at 16 […]
Jared Griffin is the Founder and CEO of Anabelle’s Challenge, the UK’s leading charity for Vascular Ehlers-Danlos Syndrome (EDS). In […]
