Wong-Rieger briefed journalists in September 2021: Rare Diseases: A Global Challenge and in October 2022: Empowering Rare Disease Patients Through Advocacy and Counseling. 

Durhane Wong-Rieger is the President and Chief Executive Officer of the Canadian Organization for Rare Disorder (CORD). As an outspoken patient advocate, Durhane made a significant contribution to the haemophilia community following the contaminated blood scandal exposed in the early 90s.

She began working with CORD as a volunteer in 2006 when she developed an Orphan Drug Policy and headed the advocacy campaign to improve access to new therapies for rare diseases. In 2012, Durhane became president of the Canadian organization.

Durhane believes strongly in the value of international collaboration, serving on the Board of the International Alliance of Patients’ Organizations and as Chair from 2011-2013.

Through CORD, Canada was the first non-EU country to adopt Rare Disease Day in 2008. Durhane also took an active role in helping to set up the Asia-Pacific Alliance of Rare Disease Organisations (APARDO), serving as Secretary of the alliance. More recently, she was appointed as the President of APARDO.

Durhane has a Ph.D. in psychology and, alongside her husband, has adopted two children, each born with different rare conditions.