Let us know what you think of this episode! We read every comment we receive.Eddison is almost 11 and lives with a rare genetics disorder called Xeroderma Pigmentosum. He and his brother talk about growing up in the rare disease community and how they manage to completely avoid the sun and other UV radiation in order to prevent irreversible damage to Eddison. Raife and I touch on "sibling status" and the rather unique position this puts you in. Nicola (Miller of Rare Revolution fame and also mum to these brilliant boys) also joins to give her perspective.Raife and Eddison then quiz the M4RD staff team in a Genetics Xmas quiz!!To see Raife and Eddison in action check then out at RareFEST 2019 organised by Cambridge Rare Diseases Network (CRDN): https://www.youtube.com/watch?v=z0E-poOBKtI&t=390sWatch Nicola's presentation on the efforts she had to go to in order to get Eddison's diagnosis: https://www.m4rd.org/videos/do-you-hear-me-a-parents-perspective-on-rare-disease/Learn more about Xeroderma Pigmentosum: https://www.teddingtontrust.com/Browse Rare Revolution Magazine: https://rarerevolutionmagazine.com/Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

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“What did the council decide on item 42?” — answered with the speaker and the moment.

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