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  How Rebecca Van Fraassen Battles SMA Every Day to Live Life to the Fullest

  When Rebecca Van Fraassen was two years old she was diagnosed with spinal muscular atrophy (SMA), a rare genetic disorder.

  4 min read
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  Research and Development Are Crucial to Discoveries in Rare Disease

  Susi Vander Wyk explains how R&D could help increase access to treatment for Canadians living with spinal muscular atrophy.

  2 min read
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  New Treatments for SMA Provide Options for Patients

  SMA treatments can help patients maximize independence and preserve functioning that's vital to their daily lives, but access hurdles remain.

  5 min read
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  The Rare Disease Opportunity of a Lifetime

  After decades of advocacy, Canada’s rare disease community can develop a comprehensive rare disease strategy — but time is short.

  2 min read
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  A Rare Disease Isn’t Stopping This Ambitious Young Artist

  Thanks to therapeutic advances, adults with SMA — like 21-year-old OCAD student Rebecca Van Fraassen — are chasing their dreams and reaching their potential.

  2 min read
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  s Sponsored

  All SMA Patients Need New Treatment Access

  There's only spinal muscular atrophy treatment available, but not every patient has access. It's time we take a look at Canadian rare disease policy.

  4 min read
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  Is Equitable Access for Rare Disease Drugs Within Sight?

  Durhane Wong-Rieger speaks to the need for equitable access among rare disease patients in Canada, and the unique challenges they face.

  3 min read
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  Sick Teens See SMA Treatment Just Out of Reach

  Spinal Muscular Atrophy patients spend a long time waiting for access to treatment — and for Ishan and Shanaya Manerikar, it's time they don't have.

  4 min read
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  Why Can’t Children with Rare Diseases Get Access to Treatment?

  Parents with children with rare diseases such as spinal muscular atrophy (SMA) are fighting for equal access to treatment.

  5 min read