Ottawa, Canada

Represented: Patients, Caregivers, and Patient Advocates

Maureen Smith’s interest in patient advocacy stems from numerous years as a patient, subsequent to being diagnosed with a rare disorder at the age of eight. She has a long history of active collaboration with the medical research community. She was the first layperson on the Canadian government’s Inter-Agency Advisory Panel for Research Ethics and was the citizen member on the National Placebo Committee. In 2012-2013, Smith was featured in a print and television media awareness campaign to promote medical research. Smith has been a member of the Board of Directors of the Canadian Organization for Rare Disorders (CORD) since 2009 and its Secretary for four years. She is co-chair of the Rare/Orphan Disease program track for DIA’s annual meeting (2014-2016). She is a member of the Canadian Institute of Health Research’s (CIHR) Institute of Genetics’ Health Services, Policy and Ethical, Legal and Social Issues Research Priority & Planning Committee. Smith is a member of the Patient Liaison Committee of CIHR’s PRISM - Promoting Rare Disease Innovations Through Sustainable Mechanisms. She serves on a steering committee on patient collaboration in research for the Montfort Hospital’s Research Institute, a University of Ottawa-affiliated institute that serves the needs of the minority Francophone population in Ontario. Smith was appointed to Ontario’s Committee to Evaluate Drugs as a patient member in 2014. In this role, she has reviewed hundreds of patient submissions.

Smith served as a member of the Advisory Panel on Rare Disease from August 2016 to August 2019.

Conflicts of Interest

As of March 31, 2016

  • Canadian Organization for Rare Disorders, Volunteer Board Member
  • Ontario Ministry of Health and Long Term Care, Patient Member on Committee to Evaluate Drugs 


Person Type