We sat down with Nick Sireau – CEO of the AKU Society, a rare disease advocacy group, and a member of the Lumanity Expert Patient Council – to talk about the challenges facing the rare disease community. This included the impact of the COVID-19 pandemic on patients with rare diseases and their families, and also the need for better partnerships with stakeholders to accelerate and broaden access to life-saving treatments for the rare disease community.

Here we share his incredible personal journey in advocacy, and his insights for meaningful change.