“…Disease advocacy organisations (DAOs) represent a powerful force in society, raising funds for, and awareness of, a vast range of diseases (Best, 2012, 2019; Ganchoff, 2004; Gunnarsson Payne & Korolczuk, 2016; Hess, 2004; Kurhila et al., 2020; Lindén, 2021; Nahuis & Boon, 2011; Ozieranski et al., 2022; Rose, 2013; Strach, 2016). Such organised efforts influence patient access to drugs (Lindén, 2021), allocations of public research budgets (Best, 2012), provide rare condition patients with empowerment and ability to influence science (Hess, 2004; Panofsky, 2011), offer partnership between patients and care providers (Kurhila et al., 2020; Wong‐Rieger, 2017) and foment broader public engagement (ibid). DAOs often also play key roles in health social movements, drawing attention to conditions overlooked by mainstream medicine (e.g.…”