On Rare Disease Day, BIOTECanada and its members stand with Canadians and their families affected by a rare disease. In Canada, one in twelve people have a rare disorder and approximately 3 million Canadians and their families face a debilitating disease that severely impacts their lives. Though each condition affects only a small number of individuals, rare diseases collectively impact 300 million people globally.
While over 7,000 rare diseases have been identified, there are very few actual treatments available, leaving most patients undiagnosed and without access to care. Addressing these unmet medical needs requires continued investment in research, innovation, and access to care.
BIOTECanada is proud to support our members driving breakthroughs in rare disease treatments. Leveraging AI, genomics, and advanced biotechnology, our members are deepening molecular understanding, advancing cell and gene therapies, and accelerating innovation through collaborations with global pharma and leading Canadian research institutions.
The Canadian 2023 National Rare Disease Strategy, backed by $1.4 billion in funding, is an important step forward. Today, there are ongoing bilateral agreements with Ontario, New Brunswick, Saskatchewan, Alberta, Newfoundland and Labrador, and British Columbia that will help advance patient access to rare disease treatments, early diagnosis, and screening.
These federal and provincial collaborations are important milestones in reducing barriers to access life-changing therapies, an effort BIOTECanada continues to champion. More needs to be done.
As part of this effort, BIOTECanada, as a member of the Implementation Advisory Group (IAG) for the National Strategy for Drugs for Rare Diseases, remains committed to working with government, researchers, and industry to advance biotechnology-driven solutions that improve access to innovative treatments for those affected by rare diseases.