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

At first, my son’s rare disease diagnosis left me feeling completely helpless. Now I openly share how I overcame fear, shame, and isolation and found the strength I needed to succeed as a mom.

Following my Behçet’s diagnosis, I yearned for connection as a way of navigating life with a rare disease. What I found helped me to not only survive, but thrive.

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.

Dravet syndrome

Patient Voice spoke with Leanne and Brian Michalofsky about their lifelong search for answers and a sense of normalcy for their son Luke.