Gaucher disease

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

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.

Patient Voice spoke with Dr. Lucie Lafay-Cousin about neurofibromatosis type 1 (NF1), a rare genetic condition that is usually diagnosed in childhood.

Patient Voice spoke with Dr. Dalia Rotstein to learn more about neuromyelitis optica spectrum disorder (NMOSD), a rare and debilitating inflammatory disease that affects the optic nerve, spinal cord, and brain. She discusses similarities and differences between NMOSD and multiple sclerosis (MS) and why prompt diagnosis and appropriate disease management are crucial.

Patient Voice spoke with Dr. Wingfield Rehmus about epidermolysis bullosa (EB), the rare skin disease affecting approximately 300 to 500 people in Canada.

Essential thrombocythemia (ET)

Patient Voice spoke with Lisa Taylor to learn about the urgent drug shortage facing Canada’s essential trombocythemia (ET) community.

Rare autoinflammatory disease

Patient Voice sat down with Daniel Kinchlea, a passionate young rare disease advocate and published children’s book author.

Limb-girdle muscular dystrophy

Patient Voice spoke with Kae Tran about learning to accept her muscular dystrophy diagnosis and how she’s working to represent the disabled community online.

Neurofibromatosis type 1 (NF1)

Nathan Turgeon, a 16-year-old from rural Quebec, is living with a rare genetic condition called neurofibromatosis type 1. But this ambitious, hockey-loving teenager won’t let anything hold him back from achieving his goals.

Neuromyelitis Optica Spectrum Disorder (NMOSD)

Lelainia Lloyd reflects on a long and accomplished career as a chronic illness and disability advocate.

Alpha-1 Antitrypsin Deficiency

Patient Voice spoke with Angela Diano about the numerous barriers that hinder progress when bringing innovative therapies to Canadian rare disease patients.