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Canadian Organizations for Rare Disorders

CORD: Open Letter to Premiers

July 19, 2022

The Canadian Organization for Rare Disorders (CORD) has released a new open letter calling on Canadian Premiers to step up and add their respective and collective perspectives and contributions to the proposed national rare diseases framework to bring into reality a Canadian Rare Disease infrastructure that will assure optimal effectiveness and cost-effectiveness of a Canadian Rare Disease Drug Program.

“Canadians living with Duchenne muscular dystrophy struggle to access medications aimed to slow down the progression of this life-limiting muscle-wasting condition,” shares Nicola Worsfold, National Vice-President of Research, Education and Advocacy at Defeat Duchenne Canada. “Furthermore, as children age out of pediatric care to adult care, access to specialists, treatments and supportive therapies becomes even more challenging at a time when complications due to disease progression intensify and the need for support is much greater.”

Defeat Duchenne Canada supports CORD’s recommendation to the Premiers to work together to establish pan-Canadian Centres of Excellence to ensure that Canadians with rare diseases can access the best care and treatment for their condition regardless of where they live or their drug plan provider.

Centres of Excellence bring together teams of clinical experts in a nationwide network of cutting-edge facilities, intending to provide standards of specialized care and disease management for people living with a rare disease and their families, regardless of where they live or their drug plan provider.

For this reason, we are asking our government to commit dedicated funds to support establishing a network of centres of excellence that includes Duchenne muscular dystrophy across Canada.

Read the open letter and subsequent proposal from CORD by clicking the button below.