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

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

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.

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.

OTC Deficiency

Patient Voice spoke with Kate Vinokurov about her son Etan’s rare disease diagnosis and why it’s important for her to feel in control amidst uncertainty.

Alagille syndrome

Patient Voice spoke with Tara and Ben Jaques about their son Chord’s rare diagnosis and how a life-changing medication has finally granted him a sense of peace.

Lissencephaly & Lennox-Gastaut syndrome

Patient Voice spoke with Valeriya Demydenko about sharing her son Yaro’s health journey on social media, and why she maintains a transparent dialogue about the difficult and joyful moments of their life.

More stories of "rare" strength, perseverance, and hope from across Canada.