Teaming up to take on ALS

Mark explores his evolution from professional athlete to advocate.

Going to bat against a rare metabolic disorder

Andrew shares how LCHAD continues to impact nearly every aspect of his life.

Balancing young adulthood with a fatiguing rare disease

Olivia opens up about her 12-year battle with paroxysmal nocturnal hemoglobinuria (PNH).

Coming of age with XLH

Alice explores the unique challenges that come with balancing a busy life and transitioning to adult care.

On seeking joy following a rare cancer diagnosis

Jules shares why she chooses to confront CCA with hope and optimism.

An all-too-common concern for Canada’s “rare” community

An anonymous patient discusses the stigma of living with a rare, inherited disorder like HoFH.

Meet Our Rare Disease Experts

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.