Rett Syndrome

Learn how the isolation she felt following her daughter’s diagnosis inspired Trish Guimond to ensure that no other family would feel the same way.

Rare disease

Learn about how a heartbreaking encounter with a rare disease family inspired Jonathan to devote his career to Canada’s 1 in 12.

Sickle cell disease

Learn about how Biba’s son Ismäel’s sickle cell journey inspired her to want to effect systemic change for an entire community.

Gaucher disease

Learn about how Christine’s daughters Kate and Meghan inspired her to join the fight for access to treatments for Gaucher disease.

During her fertility journey, Hannah was diagnosed with paroxysmal nocturnal hemoglobinuria, a rare blood disorder that reshaped her path into motherhood and made every day a battle against fatigue.

Autoimmune encephalitis

Patient Voice spoke with Alanna Yee about the sudden illness that interrupted her career in medical laboratory science and set her on a journey to find answers and treatment—and reclaim her cognitive health.

HLH & Grief

Patient Voice spoke with Tayler DeLisio about her late husband Wes’s difficult diagnosis—and how she and their daughter, Aubrey, are navigating life after his passing.

NF1 & Thalassemia

Patient Voice sat down with Tasha Kavanagh about facing a rare disease diagnostic journey not once, but twice.

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.

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.

Patient Voice spoke with Dr. Jocelyn Garland to learn about two ultra-rare forms of kidney disease that can lead to kidney failure if untreated: C3 glomerulopathy (C3G) and immune complex-mediated membranoproliferative glomerulonephritis (IC-MPGN).

Patient Voice sat down with Beth Vanstone and Alice Williams, rare disease advocates and Ontario Rare Action Group co-founders, to discuss diagnosis, treatment and care gaps — and how grassroots advocacy can drive meaningful change.

This Rare Disease Day, Canadian families living with rare disease have much to celebrate — and even more to look forward to.