Rare Disease Day and breakfast surprises from ISPEP for Lindsay Randall: The champion of Patient Advocactes

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.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 Offers Quest in 2019, despite the challenges of raising two children with a rare disease during the COVID-19 pandemic.Lindsay emphasises the importance of meaningful patient engagement, cautioning against tokenism and highlighting the need for genuine listening and understanding in research projects. She also discusses the complexities of navigating scientific jargon and the importance of translating this information for the patient community. The podcast episode, published for Rare Disease Day, underscores the ongoing efforts to improve diagnostic and care pathways for rare disease patients.In recognition of her efforts, the ISPE 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.