Health Insight
CAMPAIGN: Rare Disease (2022)
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New Father Battles Rare Disease While Waiting for Treatment Access
When you live with a progressive neuromuscular disease like spinal muscular atrophy (SMA), timely access to treatment is critical to retaining strength and ability.
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How Adopting a Rare Diseases Strategy Could Save Lives in Ontario
In early 2021, Life Sciences Ontario (LSO) released a white paper outlining the five key strategic pillars essential to creating an integrated strategy for managing rare diseases in Ontario.
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Adult SMA Patients Left in the Lurch with Delayed Treatment Access
Mental health concerns are rampant more than ever among adult patients with Spinal Muscular Atrophy (SMA). Here’s how Cure SMA Canada is advocating for adult patients with the progressive disease.
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Why It’s Important to Recognize Signs of Rare Blood Disease
The road to a paroxysmal nocturnal hemoglobinuria (PNH) diagnosis can take up to five years. That’s why awareness is critical for both patients and physicians. Paroxysmal nocturnal hemoglobinuria (PNH) is an ultra-rare and acquired blood disease caused by a mutation in some of the bone marrow stem cells. “The subsequent blood cells produced lose their...
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Conquering Rare Disease — Even in the Era of COVID
The long-awaited launch of Canada’s Rare Disease Drug Strategy will help get therapies to people with rare diseases faster.
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How New Treatment for gMG Is Changing Ghassan Akl’s Quality of Life
Living with generalized myasthenia gravis (gMG) used to mean leading a very restricted life. New treatment options are now changing that.