Health Insight
Rare Disease 2025
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Defeat Duchenne Canada Wants to Turn Rare Disease Promises into Action
Bridging the gap in treatments, policies, and support for Duchenne and all rare disease families in Canada. On February 28th, we recognize Rare Disease Day. For families impacted by Duchenne muscular dystrophy and other rare diseases, it is a day to raise awareness of what is happening in Canada for people with rare diseases. Thirty...
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Taking control: How patients living with SMA can achieve more through active living
Exercise is a key difference maker for patients with SMA and works hand in hand with other medical advancements. As a child, Mitchell Choma rarely sat still. Passionate about sports, he especially loved playing football and hockey in his hometown of Burlington, Ont. Then, at 15, his future was put in doubt when he was...
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s Sponsored
Innovative Pathways to Improving Access to Treatments for Rare Diseases
Innovative patient support programs and data-driven solutions are improving access to life-saving rare disease therapies in Canada. Patients with rare diseases face significant barriers in accessing innovative therapies. The high cost of these drugs presents challenges to public and private drug programs, as well as the provincial and territorial health care systems. Timely access to...
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s Sponsored
Strengthening Canada’s Rare Disease Strategy: A Call for Action
Changes are needed to Canada’s national rare disease strategy to improve timely access to innovative medicines. Over the past two years, Canada has made some progress in addressing the needs of the 1 in 12 Canadians living with a rare disease. The announcement of the National Strategy for Drugs for Rare Diseases in March 2023,...
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2025: Canada Still Only Developed Country with No Rare Disease Plan
To truly help rare disease patients, Canada must turn promises into action and funding. In 2015, the Canadian Organization for Rare Disorders (CORD) presented to the federal government a National Rare Disease Strategy. In March 2023, the federal government announced $1.5 billion over three years for a Rare Disease Drug Strategy, with $1.4 billion in...
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s Sponsored
Eosinophilic Esophagitis: Urgent Need for Better Access to Treatment
Eosinophilic esophagitis is a rare, lifelong disease causing severe digestive issues. Advocates urge action for medication coverage. Imagine eating a cactus and feeling its spines painfully pierce your throat with every swallow. This is life with eosinophilic esophagitis, or EoE, where having a meal is just as excruciating. Sometimes, you choke on food or feel...
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Navigating Turbulent Waters Of Access To An Orphan Drug For A Rare Disease: My Family’s Story
Facing rare disease challenges, a family calls for change to ensure affordable, life-saving treatments for all. I am Jennifer Adams, a family physician in Ottawa, and this is my family’s story. Our journey began when my daughter, now five, was diagnosed at 18 months with primary hyperoxaluria type 1 (PH1), a rare and life-threatening genetic...