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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 […]

Patient Perspectives: Nina Knight – Mother, Advocate and Chair of Acrodysostosis Support & Research

Nina Knight is a mother, advocate and Chair of the Acrodysostosis Support & Research Charity. Knight’s daughter, Lily, was diagnosed […]

Patient Perspectives: Daniel Lewi, Founder and CEO, CATS Foundation

Daniel Lewi is the Founder and CEO of the Cure and Action for Tay-Sachs (CATS) Foundation, which supports children and […]

Perspectives on cell and gene therapies

We summarise a recent systematic review of the current evidence on patient and public knowledge and perspectives of cell and […]

The UK is developing a new approach to patient-centric precision medicine research

Sano Genetics, Zetta Genomics and Genomics England have partnered to develop a novel system to allow rare disease patients and […]