Bluesky: @seastarbatita

Isabel Jordan draws from her lived experience to provide leadership and guidance in health care and health care research to support meaningful patient partnership practices that are aligned with patient-oriented research.

Isabel was a founding member of the Rare Disease Foundation. Under her leadership, the organization built partnerships between families and researchers through their Research Micro-Grant Program. Isabel is the Strategic Lead in Patient Partnerships in the Chambers Lab at Dalhousie University as well as the Patient Partnership advisor for SKIP, a knowledge mobilization network that seeks to bridge the gap between treatment practices and evidence-based solutions for children's pain in Canadian health institutions.

She is the mother of two disabled young adults living with pain and has drawn on her lived experience in rare disease and disability to become a strong advocate for patient partnership in research.  She’s been interviewed on CBC radio, 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.