Eddison & Raife Miller

Youth Ambassadors & Volunteers

Eddison (AKA Ted) is 11 years old, and was diagnosed with the ultra-rare disease xeroderma pigmentosum (XP) when he was just 13 months old. He is now one of only around 110 people in the UK with XP. Having XP means that Eddison will spend his whole life shielded from UV light which includes all daylight and most types of artificial lighting—despite this Eddison lives an active life with his brother Raife and he wants to show the world that “anything is possible”. Eddison also lives with the effects of two other conditions so knows well the challenges of being a child with complex health needs. Eddison is an advocate for kids with XP through the work of his family in founding the XP charity Teddington Trust, he is also the inspiration behind the Little Ted book series which has educated over 100,000 of children globally about XP and rare disease. Eddison is a regular columnist for RARE Youth Revolution and writes about the issues that affect young people living with RARE.

Rare quiz & myth busters

Brothers, Eddison (11) and Raife (10), are excited to be returning to Rare Fest this year to introduce the RARE Youth Revolution Myth Busters session where our youth community set out to dispel the myths and misconceptions of living with a rare disease. The duo will also bring their own brand of cheek and charm with another RARE Youth Quiz—testing your knowledge on all things genetics and rare disease. Education and giggles guaranteed!