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Patient Perspectives: Kay Parkinson, Founder and Company Secretary, Rare Disease Nurse Network

Although Kay Parkinson is officially retired, she volunteers at the Rare Disease Nurse Network where she is the Founder and […]

Patient Perspectives: Peter Coleman, Independent Researcher and Full-time Carer

Peter Coleman is an independent researcher and full-time carer with a background in sound, TV, film and special effects. Both […]

Patient Perspectives – Daisy Ireland, Charcot-Marie Tooth Patient

Daisy Ireland is a Content and Event Producer at Front Line Genomics. Ireland not only has a background in Molecular […]

Patient Perspectives: Caroline Presho – Director of BRCA Umbrella

Caroline Presho is a mother, motivational speaker and Director of the online platform, BRCA Umbrella. After testing positive for a […]

Patient Perspectives: Sarah Winckless – Leadership and Performance Coach and Olympic Bronze Medallist

Sarah Winckless is a former British rower, Bronze Olympic Medallist and the first woman to umpire the men’s Boat Race. […]

Patient Perspectives: David Edward Rose – Ultra-Rare Disease Patient Speaker

David Edward Rose works for a rare disease magazine called Rare Revolution Magazine. He is also an ultra-rare disease patient […]

Patient Perspectives: Vaila Morrison – Architect, Mother and Rare Disease Advocate (KAT6A syndrome)

Vaila Morrison is an architect focused on sustainable and inclusive design as well as a mother to a child with […]

Patient Perspectives: Dominique Goodson – Sickle Cell Warrior and President of the SCDForum

Dominique Goodson is a sickle cell warrior, advocate and president of the online platform, SCDForum. After being diagnosed with sickle […]

Patient Perspectives: Maddie Stoodley – Gaucher’s Association Ambassador and UK Board Member

Maddie Stoodley is a rare disease patient and Gaucher’s Association Ambassador and UK board member. Stoodley was diagnosed at 16 […]

Patient Perspectives: Jared Griffin – Founder and CEO, Annabelle’s Challenge

Jared Griffin is the Founder and CEO of Anabelle’s Challenge, the UK’s leading charity for Vascular Ehlers-Danlos Syndrome (EDS). In […]