Authentic friendships, both in-person and online, became a lifeline for me. They offered strength and allyship when I needed them most.
Bardet-Biedl syndrome (BBS) has touched nearly every aspect of Natasha Rivard’s young life. Now, as she enters adulthood, her mother, Annie, is pausing to reflect on just how far she’s come.
While cutaneous T-cell lymphomas are extremely rare, they’re also easily misdiagnosed. If you’re experiencing unexplained skin-related symptoms, knowing what to look for and which tests to request can help expedite diagnosis.
Cholangiocarcinoma
Patient Voice spoke with Terry May about fundraising for cholangiocarcinoma, coming to terms with his own illness, and focusing on being the best dad he can be.
Learning how to speak up and advocate for oneself can greatly impact patients’ care and health outcomes.
New therapies have been shown to potentially slow the progression of spinal muscular atrophy (SMA) — so why are many adult patients unable to access them?
Morquio syndrome (MPS IVA)
Patient Voice spoke with nine-year-old Simon Hoskins and his mother, Becs, about Simon’s journey with Morquio syndrome, the challenges he faces, and how he continues to remain positive and resilient in the face of a rare disease.
COVID-19
When Jana Ray contracted COVID-19 in early 2023, the virus almost put her in the hospital. Later that year, when she tested positive again, she and her husband, Ivan, had a plan.
Breast Cancer
Patient Voice spoke with Seana Shallow about being diagnosed with triple-negative breast cancer the day before she turned 27, and how it has pushed her to redefine her vision of the future.
Proximal femoral focal deficiency
Patient Voice spoke with Nasif Chowdhury about growing up with a limb difference, and his path to representing Canada in wheelchair basketball.
Juvenile Idiopathic Arthritis / MAS
Patient Voice spoke with gym owner and powerlifter Zac Spinosa about the experience that turned his life upside down, and the roles movement and community have played in his recovery.
Patient Voice is an independent, Canadian-owned digital publisher and online community devoted to elevating the voices of patients, caregivers and clinicians as a means of effecting meaningful and positive change.
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