Sisters, Nicola Miller and Rebecca Stewart are the founders of the ‘Teddington Trust’, which offers globally, emotional and practical support to patients and families affected by the very rare condition, Xeroderma Pigmentosum (XP).
XP affects less than 100 people in the UK, and when Nicola’s son, Eddison, was diagnosed in 2012 at the age of one, the family knew nothing of the condition.
It was then that Nicola, alongside Eddison’s aunt and uncle Rebecca and Wilbur, set up the Trust to provide free educational resources on the complex condition. Their Ted bear, dressed in UV protective clothing and with a UV reactive paw, has helped 650 children in 11 countries understand their condition through play. Aiming to also achieve greater inclusion and acceptance of rare diseases amongst the wider community, Rebecca and Nicola have developed school resources that share information about XP.
The sisters are also the co-founders of ‘Rare Revolution Magazine’, a free access, cross-condition, rare disease publication aimed at raising awareness for the wider rare disease global community. They produce a free digital magazine which shares patient voices to educate others into the reality of living with a rare disease and to inspire others.Tags: rare diseases