‘This disease will slowly rob me of everything’: Why are Canadians living with rare diseases waiting for treatment?
COVID has proven we can quickly set up infrastructure without long-term clinical data. It’s time to do the same with rare diseases, says Durhane Wong-Rieger, president and CEO of Canadian Organization for Rare Disorders. Vanessa Hrvatin, Feb 28 2022 Sasha Kirkland, pictured with her husband, Mark and son Maks, lives with spinal muscular atrophy (SMA).…