Nicola is a Architectural Technologist, whose path took a turn for the RARE in 2012 when her son (aged just 13 mths old) was diagnosed with an ultra-rare genetic condition, xeroderma pigmentosum. Since then, as well as being a full-time Mum to her two sons, she is co-founder of the rare disease patient support charity Teddington Trust and active RARE advocate. She is the author and creator of the BMA Award winning book Little Ted and passionate about better representation for RARE diseases across all walks of life. She is also the co-founder and Editor-in-chief of Rare Revolution Magazine.
At the heart of everything Nicola strives for is EDUCATION! Patient, peer, clinical and general education. With 1 in 17 of the UK population affected by a rare disease, at TEDx Square Mile Nicola will explain how better education about RARE is vitally needed across all walks of life. Those affected, face daily prejudice from others, and often suffer in silence, facing crushing experiences of isolation and difference at the hands of society. She will explain how we need to work to teach about rare diseases and encourage a culture of inclusion, empathy and understanding so that we can learn to embrace and not fear – leading the way to a better society.