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.

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.

CHD2 myoclonic encephalopathy

Patient Voice spoke with Sandra Markus about her son Zach’s ultra-rare disease diagnosis and why it’s proven so hard to find him appropriate support as he ages into adulthood.

Undiagnosed genetic condition

Patient Voice spoke with Jeff Norgren and Michelle Hooey about how their youngest daughter Goldie has changed their lives for the better, and why they’ve chosen to share their rare disease journey with the world.

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.

Authentic friendships, both in-person and online, became a lifeline for me. They offered strength and allyship when I needed them most.‍