We ended the year without a national plan in force and patients still waiting for treatments that could save their lives or improve them considerably.
Kathleen reflects on challenges and triumphs from her FOP journey.
Fatoumata’s quest to identify the rare condition affecting her family.
Mark explores his evolution from professional athlete to advocate.
Andrew shares how LCHAD continues to impact nearly every aspect of his life.
Olivia opens up about her 12-year battle with paroxysmal nocturnal hemoglobinuria (PNH).
Alice explores the unique challenges that come with balancing a busy life and transitioning to adult care.
Jules shares why she chooses to confront CCA with hope and optimism.
An anonymous patient discusses the stigma of living with a rare, inherited disorder like HoFH.
Sumaiya and Ibrahim share their journey with Duchenne muscular dystrophy.
Morning show host Sandra Plagakis and her frustrating odyssey to being diagnosed with myasthenia gravis.
Kim shares how she ultimately arrived at an HAE diagnosis.
More stories of "rare" strength, perseverance, and hope from across Canada.
Patient Voice spoke with 11 rare disease experts from across Canada to learn about a range of important topics, including diagnosis, genetic testing, clinical trials, access to medicines, and mental health.
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