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Teddington Trust

Helping to bear the burden of a rare disease

The Teddington Trust provides practical and emotional support and guidance to patients and families affected by the rare condition, xeroderma pigmentosum (XP). Living with a rare disease can be extremely isolating and peers often have little understanding of the challenges. Misconceptions and prejudices occur, stemming from fear of the unknown. Many patients suffer crushing experiences as a result of misguided remarks and behaviour from society, sometimes leading to threats and fear of violence.

Teddington Trust ImageTo achieve better and more lasting acceptance and inclusion the trust developed a school resource to address these attitudes and teach children at primary school level about the key themes of inclusion and rare disease. The BMA award-winning patient information pack involves Little Ted, a universally loved and culturally sensitive UV-reactive character bear. Little Ted teaches the message that we are all the same, but different, while also successfully addressing sun safety. He helps explain to young children the need to comply with photo-protection measures. He also seeks to improve poor understanding and education overseas, which can result in little to no patient protection, drastically shortened lives and painful death from aggressive cancer.

Despite the charity being tiny, with no paid staff, it has managed to distribute over 400 Little Ted patient information packs internationally. The charity has received feedback from children, support groups and clinics from around the world, which has been overwhelming. It says that the comfort of having a “friend like me” is unmeasurable.

teddingtontrust.com

OSCR reg no: SC045465

Children and youth category sponsor: