PEP Talks: Rare Disease Day and breakfast surprises

Special Guest: Lindsay Randall

Lindsay Randall, a children’s nurse and patient advocate, shares her journey of founding a patient advocacy group after her two children were diagnosed with the rare condition SLC6A1. This condition, affecting fewer than 40 families globally at the time of her son's diagnosis, presents significant challenges, including learning disabilities and challenging behaviours. Lindsay's advocacy work began with fundraising efforts and evolved into founding a patient organisation called Arthur's Quest in 2019, despite the challenges of raising two children with a rare disease during the COVID-19 pandemic.

In recognition of her efforts, the ISPEP community announced a donation of 5% of all memberships from Rare Disease Day this year to the next, to support Lindsay's patient organisation. This gesture acknowledges the significant impact of her work and the importance of supporting rare disease communities.

Novo Nordisk has not had any input into the development of the podcasts or the selection of speakers. Novo Nordisk is the sole sponsor of the activity.

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