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Writer's pictureRAREYouth

RARE Youth takeover for Rare Disease Day 2020

Nine year old Eddison and his seven year old brother Raife, staged a #RAREYouth takeover of RARE Revolution Magazine and rare disease charity Teddington Trust for Rare Disease Day 2020

Eddison was diagnosed at 13 months old with the ultra-rare disease of xeroderma pigmentosum (XP), since then he has been a wonderful advocate for rare disease, with his own family charity, Teddington Trust, founded in his honour, who support children and adults across the world, living with XP.


Just for RDD2020, Eddison and Raife decided to take over their mum, Nicola Millers's, job as both editor-in-chief at RARE Revolution Magazine and co-founder and Chair of Trustees of Teddington Trust.


"Enjoy our video, and don't forget, you are never too young to raise awareness and advocate for yourself and others!"

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