Making the Case Rare Diseases are Fundamental

Nick Sireau’s efforts to find a cure for his children’s rare genetic disease alkaptonuria caused him to confront struggles faced by many people within the rare disease community as they seek to raise funds, foster research, and learn about running clinical trials and supporting patients. The experience led him to create Findacure, an organization that seeks to train, mentor, and empower patient groups. We spoke to Sireau, chairman of Findacure, about the organization, where it is focusing its efforts, and why he prefers the term “fundamental” diseases to “rare diseases.”