Bio



Isabel Jordan is a founding member and Chair of the Rare Disease Foundation.  Under her leadership, the organization has built partnerships between families and researchers through their Research Micro-Grant Program.  She is also a parent advisor in It Doesn’t Have to Hurt campaign to disseminate research knowledge about managing children’s pain.


Isabel is the mother of a young man living with a rare disease and has drawn on her post-secondary degree in biology to become a strong advocate for patient partnership in research.  She’s been interviewed on CBCradio, written blog posts on patient engagement, co-authored charters with the Patients Included movement, is a member of numerous health research committees, and has spoken at national and international conferences about collaborations between researchers and patients.  She has also received the Canadian Organization for Rare Disorders Rarity Award and the Patient Safety & Quality Council Quality Award in Advancing the Patient Voice.