Isabel Jordan is one of the founding members and the current Chair of the Rare Disease Foundation. 16 years into parenting 2 children, 1 with a rare disease, has taught her many lessons – one of which is that partnering with health care providers and researchers can improve and inform both care and research.  Connecting with other parents and health care providers has made her a strong proponent of patient advocacy and family and patient led care.

Isabel has spent the past few years spreading the word about patient partnership in both research and clinical practice through her blog, social media and through speaking opportunities at health care & research conferences, as well as patient engagement opportunities in research projects.