How a Brother’s Love Is Forging a Path for Customized Therapies for Rare Disease Patients

Rich Horgan was attending Harvard Business School when he started reaching out to leading researchers to learn about his brother Terry’s condition Duchenne muscular dystrophy and what could be done to accelerate efforts to find a cure. Horgan was taken with the work of Timothy Yu to develop a customized therapy for a young girl with a form of the rare neurological condition Batten disease and founded the nonprofit organization Cure Rare Disease to develop customized therapies to treat patients with rare, genetic conditions. We spoke to Horgan, founder and president of Cure Rare Disease, about the organization, his efforts to develop a treatment for his brother, and what it will take to scale the process to address the needs of a large group of patients with rare, genetic conditions.