Eddison is awarded Try Angle Award for Community Action

On May 25th 2023, Eddison (aged 11) was invited, along with other inspirational children from his region to attend the Try Angle Awards ceremony. Here he was awarded the Try Angle Community Action award, which was given in recognition for his considerable youth advocacy work in the field of rare disease, and in raising awareness for the ultra-rare condition, xeroderma pigmentosum. The award was chosen by a panel of judges who were greatly impressed by Eddison's achievements.

Below is copy of the citation, which accompanied presentation of his award:
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Eddison deserves recognition for his community action due to his considerable contribution to the rare disease community. Since a young age, Eddison has been a youth Ambassador for Action for XP where he has shared his experiences of growing up with the ultra-rare disease xeroderma pigmentosum. He is the inspiration behind the Little Ted project, which has been sent to over 1,000 children living with XP globally, and which has been used in schools to educate 1,000s of school aged children about rare diseases. He's worked hard to raise awareness for XP through campaigns, including with Children in Need, and via participation in events. Furthermore, Eddison is an active member of the RARE Youth Revolution, where he takes part in focus groups, social media campaigns, and contributes a regular column. In his column, Eddison shares his experiences, giving advice and inspiration to other young people living with rare disease, motivating them to push their own limits, and strive to make the most out of every opportunity, despite their own conditions and the challenges they present. His impact on this global rare disease youth community is significant.
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​ I am exceptionally pleased to hear of Eddison's award in recognition of his youth advocacy work! Eddison has done some tremendous work raising awareness for rare diseases at RARE Youth Revolution. He has facilitated interviews through our RARETalks series, written articles in his regular column, Eddison Explores and conducted Rare Quiz and Mythbusters sessions with his brother Raife, at CRDN's bi-annual RAREfest. I am pleased to see his achievements have been acknowledged and cannot wait to see what he brings to us next!

Chelsea Wong, RARE Youth Revolution, youth coordinator

 Eddison is a fabulous young man who has done much to raise awareness for other people with XP and their families, not least being the inspiration behind the little Ted series. His approach to daily life is exemplar of the resilience we all strive towards. We look forward to seeing more of Eddison and his fantastic brother Raife as they approach the next chapter of their life. 

Dr Richard Barlow, Chair of Trustees, Action for XP

​ We are very proud of all that Eddison does to demystify living with XP. To say he was chuffed with his award would be an understatement, and it is wonderful for us as his parents to see him recognised in this way. He does such a lot to put himself out there in the hope to inspire and encourage others and he is the direct inspiration to so much great work that had come from his diagnosis. We are eternally proud of him.

Eddison's mum and dad, Nicola and Andrew Miller