CORD: The Outlook Internationally on Rare Diseases

Photo credit: @raredisorders

Patient advocates, health organizations, professionals and industry representatives from across the globe visited Toronto on May 10-12, 2019 to engage in a “Rare International Dialogue” on rare diseases and disorders.

The conference was hosted by Rare Diseases International (RDI) and the Canadian Organization for Rare Disorders (CORD). This was the very first time an event of this caliber and partnership was held in North America.

The shift to an international mindset towards rare diseases remarkably influenced how stakeholders approached discussions on ‘rarity’ and health system sustainability. It also encouraged a united and global front on addressing the needs of the rare disease population. To put into perspective, Orphanet identified that 3.5-5.9% of the entire world population is diagnosed with a rare disease – or . 263-446 million people in the world. In Europe alone, 4.3 million people are diagnosed with rare cancers every year.
“Our relationships in healthcare are relationships with rare diseases,” said Senator Mary Harney, a former leader and Minister for Health and Children of the Progressive Democrats in the government of Ireland.
CCSN is thankful of the opportunity to be involved in important discussions on rare diseases. We can’t wait for what’s in store for CORD and RDI next year!

About the Canadian Organization for Rare Diseases and Rare Diseases International
CORD is Canada’s national network of organizations representing all those with rare disorders. To learn more, visit
RDI recognises that people living with a rare disease are facing similar challenges irrespective of where they live in the world. To learn more, please visit