Rare Daily Staff

The Canadian Organization of Rare Disorders called for the development pan-Canadian centers of excellence for rare diseases as “low-hanging fruit” that can create “immediate and significant added value to treating patients with rare disorders.”

CORD made the call in an open letter to premiers about the development for a Canadian approach to improving the lives of 3.2 million Canadians living with a rare disease.

The letter from Durhane Wong-Rieger, president and CEO of CORD noted it takes five to 10 years to get an accurate diagnosis and years more to get to the right specialist, with multiple misdiagnoses and sometimes the wrong treatment along the way. She said while it may appear to be costly to diagnose and treat, the costs of not getting a timely diagnosis and not getting access to the best treatment are much higher.

In 2015, CORD released Canada’s Rare Disease Strategy, which proposed a five-point plan to address unnecessary delays in testing, wrong diagnoses and missed opportunities to treat. In 2019, the federal government committed to improving access to rare disease therapies by investing $1 billion over two years (2022-2023) to implement a national Rare Disease Drug Strategy with on-going investment of $500 million annually.

Earlier this year, Health Canada released its proposed framework, which includes proposed investments in a number of key areas.

“We now have a once-in-a-lifetime opportunity to build on this growing momentum to implement a coordinated pan-Canadian strategy, so that every Canadian, no matter where they live, can live his/her best life,” wrote Wong-Rieger. She said it time for provincial and territorial governments to step up and add their perspectives and contributions to the proposed framework to bring into reality a Canadian Rare Disease infrastructure.

She said centers of excellence would bring together teams of clinical experts in a nationwide network of cutting-edge facilities, with the goal to provide standards of specialized care and disease management for people living with rare disease and their families, regardless of where they live or their drug plan provider.

“Similar to how provincial cancer agencies manage all aspects of cancer in Canada, centers of excellence would present the opportunity for patients with a particular rare disease to receive the full spectrum of care and treatment for their disease,” she said. “Importantly, this is also the cornerstone for how rare diseases are treated in other key jurisdictions, including the whole of Europe.”

She noted that significant investments would be needed to help establish and support these centers and asked the premiers to commit dedicated funds to support the establishment of networks of centers of excellence across Canada.

Photo: Durhane Wong-Rieger, president and CEO of Canadian Organization of Rare Disorders

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