Health Insight
Rare Disease
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Advancements in Research Help Patients With SMA Push New Boundaries
Ty Durant & his mother, Angie. Sixteen-year-old Ty lives with Type 3 SMA and is determined to defy expectations. People with SMA once faced a bleak future. Today they’re not only maintaining ability but achieving more than ever before. Few people, including his doctor, could’ve predicted what Ty Durant would be capable of today. At...
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s Sponsored
How Patient Support Services Bolster Up Canada’s Rare Disease Strategy
Bayshore Specialty Rx is a strategic partner in the implementation of Canada’s new National Strategy for Drugs for Rare Disease. For the 1 in 12 Canadians living with a rare disease and their families, access to groundbreaking therapeutic innovations comes with a high cost. In addition to the time and financial burden of travelling to...
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Canadian Rare Disease Patients Are Getting Impatient — Here’s Why
The Canadian Organization for Rare Disorders is urging the Canadian government to accelerate its National Strategy for Drugs for Rare Diseases implementation. In 2005, Ontario ombudsman Andre Marin issued a clarion call on behalf of a rare disease community that was struggling to make its voice heard. The issue was the Ontario government’s delay in...
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s Sponsored
Breaking Down Barriers for Children with Rare Neuromuscular Disorders
During a time when being understood, included and involved is critical, classroom environments can be a daunting place for anyone, but especially for children affected by rare disorders, like neuromuscular disorders (NMD). But, Muscular Dystrophy Canada (MDC) is here to help! By joining the classroom or learning environment and offering tools to help educate a...
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Why Ontario Needs a Rare Disease Strategy
Canada’s rare disease patients face many challenges, including long diagnosis journeys and barriers to treatment access — and it’s time to change that.
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The Clock is Ticking for Ottawa to Deliver on Its Rare Disease Strategy
Canada desperately needs a rare disease strategy that’ll enable better patient care and access to treatment for those living with rare diseases. The start of a new calendar year signifies hope and new beginnings for many, but for the 1 in 12 Canadians affected by a rare disease, it marks another year without news of...
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s Sponsored
Time is Muscle for Children Living with Duchenne Muscular Dystrophy
Six medications have been approved for Duchenne muscular dystrophy in the United States and Europe, while Canadians have nothing. One in every 5,000 boys worldwide is born with Duchenne, the most common fatal form of muscular dystrophy. The disease is relentless. It slowly weakens the body’s muscles, deteriorating the function of vital organs and ultimately...