Canadian Organization for Rare Disorders calls on Canada's Premiers to invest in comprehensive rare disease programs by using $1.4 billion federal funding for more than drugs

• Despite federal funding and bilateral agreements for federal funding to all provinces and territories, not a single rare disease patient had benefited to date
• Premiers' meeting July 21-23 must be used to commit to quickly use funding to make a difference for patients

TORONTO, July 10, 2025 /CNW/ - As Canada's Premiers prepare for their Council of the Federation meeting in Huntsville, Ontario, July 21-23, the Canadian Organization for Rare Disorders (CORD) is calling urgently for accountability and action on the $1.4 billion allocated to the provinces and territories under Canada's Rare Disease Drug Strategy.

While the funding was directed to improve access to rare disease drugs, CORD stresses that meaningful impact will only be achieved if provinces also invest in the broader ecosystem of rare disease care – starting with the establishment of provincial rare disease programs, integrated centres of excellence, expanded screening and diagnosis, as well as community-based mental health, social and economic support.

Without a comprehensive approach, life-altering therapies risk being underused, misused or inaccessible to the very patients they were meant to help.

By the end of March 2025, all provinces and territories had signed bilateral agreements with the federal government to receive funding under the federal government's National Strategy for Drugs for Rare Diseases, which was announced in March 2023. The agreements provide federal funding of $1.4 billion over three years (2024-25 to 2026-27) designated to improve equitable access to rare disease treatments as well as screening and diagnostic services.

"Now is the time for all provinces and territories to establish multistakeholder implementation groups – including, first and foremost, patients but also clinicians, researchers and health system leaders – to guide the effective use of this rare disease funding," said Durhane Wong-Rieger, President and CEO of CORD. "They should advise on how to achieve the greatest benefit from the investment by going beyond drug reimbursement to build the necessary infrastructure for broader rare disease care to help patients and families manage the complex and lifelong impact of rare diseases."

Necessary actions include implementing robust screening and diagnostic systems to ensure individuals are identified and diagnosed early; establishing and supporting centres of excellence where patients can access timely, specialized and coordinated care; and ensuring that access to therapies is accompanied by ongoing monitoring to assess effectiveness, adjust treatment and manage side effects. Equally important, comprehensive care must include wraparound supports such as mental health services, social and community resources, and financial assistance.

CORD is collaborating with Ipsos to conduct a survey of Canadian families, measuring the impact of living with a rare disease. This survey builds on recent studies from Europe, Japan and the United States which have shown that investing in better and timely rare disease care results in benefits to families and to society. Canadian results will be available this fall and should serve as a guide for federal and provincial system reforms for rare diseases.

CORD also calls upon Premiers to take advantage of the recently approved Free Trade and Labour Mobility in Canada Act incorporated in federal Bill C-5, as well as inter-provincial licensing frameworks to create the foundation for both in-person and virtual cross-border care, as described in CORD's recent draft "Proposal for a National Network of Rare Disease Centres of Excellence with Cross-Provincial Service Delivery."

Said Dr. Wong-Rieger, "The wise investment of this initial $1.4-billion rare disease drug fund lays the foundation for the funding to expand the program into its next phase."

About Canadian Organization for Rare Disorders (CORD)

CORD is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada. For more information, visit www.raredisorders.ca

SOURCE CANADIAN ORGANIZATION FOR RARE DISORDERS (CORD)

For interviews and media enquiries: Don Sancton on behalf of CORD, [phone].