Co-founder and Editor Rare Revolution Magazine and Co-Founder of Teddington Trust
Rebecca’s rare disease journey began in 2012 when it arrived, uninvited, into the family with the diagnosis of her sister’s son with Xeroderma Pigmentosum at just 13 months old. Seeing a lack of information and support, especially for children, she founded the Teddington Trust which she runs with her sister Nicola. They run a number of education and health and well-being projects, as well as a dedicated patient guidance and support service. Their small charity is rapidly growing and now achieves global reach.
Frustrated by the barriers faced within the rare disease community in achieving meaningful and lasting awareness, equality, positive representation (without the sensational headlines), and access to research and drug developments, in a language that can be understood by all, Rebecca and Nicola have gone on to launch Rare Revolution Magazine. Their vision for the magazine is to create a platform for the rare disease community to find good quality information and a safe place to have their RARE voices heard.