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Alex Davey
Parent of a Child with a Rare Disease
Alex is a botanist, writer, campaigner and mum to three children and two greedy guinea pigs. Her son Benji was born with a huge smile and profound disabilities resulting from an undiagnosed genetic condition. He died in 2021, aged seven. Benji had a transformative effect on Alex’s life, introducing her to the disability rights movement, the social model of disability, the importance of language, and the challenges of equity, inclusion and access. He also helped her begin to uncover her own neurodivergence. Alex is also Deputy Director of Science at the Royal Botanic Garden Edinburgh.
Sessions
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Panel Discussion: Lived Experience of Medical Nomenclature29-Jan-2026Live Lounge Stage