Skip to content
Canadian Organization for Rare Disorders (CORD)

CORD: Rare Disease Day 2024

February 29, 2024

The Canadian Organization for Rare Disorders (CORD) celebrates Rare Disease Day with a two-day summit in Ottawa, expressing both optimism and impatience. Defeat Duchenne Canada was proud to attend and underscore the urgency with which the rare disease community needs access to funding for diagnosis, care, and treatments.

As part of Rare Disease Day, CORD issued the press release, “This Rare Disease Day, Feb. 29, CORD celebrates the launch of the Canadian Rare Disease Network – but patients still have no access to the promised $1.4 billion in federal funds for rare disease drugs” (link below).

CORD is wildly optimistic with the milestone launch of the Canadian Rare Disease Network (CRDN) – a collaboration that brings into reality the vision and strategy that CORD first proposed in 2015. CRDN brings together patient groups, clinicians and researchers under a shared vision to take coordinated action to provide support and care for the one out every 12 Canadians with a rare disorder and their families (since two-thirds of those with rare diseases are children).

“We are thrilled and congratulate everyone involved in working to create the new CRDN which will play a huge role in helping patients access better diagnosis, care and treatments for rare disorders while also promoting research and greater clinical collaboration across Canada.”

Durhane Wong-Rieger, President and CEO of CORD

While celebrating the birth of the CRDN, the rare disease community is marking Rare Disease Day with mounting impatience due to unconscionable delays in making available the committed federal government funding for rare disease medicines.

Funding was first promised in 2019 – five years ago. Last March, the federal government announced its rare disease strategy and spending plan of $1.4 billion for treatments through bilateral agreements with the provinces/territories and $100 million for federal drug plans and other research, data collection and evaluation initiatives.

However, to date, no new drug funding has become available and not a single Canadian rare disease patient has benefited, despite a huge need for new, approved, and recommended treatments for life-threatening diseases.

“However, the vital missing link is access to the long-promised new funding for treatments. Patients have every right to be impatient. We need access to those new treatments now before more lives are put on hold or even lost. We support negotiations and agreements to assure sustainable access, but we can also take immediate action to address patients with urgent needs. You must serve those in the Emergency Room even while you are developing plans for long-term care.”

Durhane Wong-Rieger, President and CEO of CORD

CORD has proposed an implementation plan by which rare disease therapies that are approved by Health Canada and recommended by value assessments would be made available immediately to patients along with a plan for on-going monitoring, data collection and assessment of benefit and potential harm.

Read the full press release below: