Rebecca Stewart
Rare Revolution Magazine & The Rare Youth Project, UK
Title: Bridging the information gap – Why do we need an information revolution
Biography
Biography: Rebecca Stewart
Abstract
Passionate about appropriate and accessible resources Rebecca will talk about why bringing science and research to rare patients is not just important for patients but is essential for the whole rare disease community. Frustrated with experiences of patients being told “you wouldn’t understand” Rebecca, and co-founder Nicola, are driven to closing the information gap and promoting empowerment through knowledge. A considerable challenge that must be addressed Rebecca will discuss why it is important to collaborate with patients when it comes to knowledge sharing. All too often patients are being sought to share their data and insights with industry for the “benefit of the whole community” often without any reciprocal flow of information. Hungry for information rare disease patients are unwavering in their quest for knowledge, so how can the scientific and research community support their learning and harness their immense force and drive for improvements whether that be in care, cures or social acceptance.