Kakkis EverLife Foundations

The EveryLife Foundation for Rare Diseases, often associated with its founder Emil Kakkis as the Kakkis EveryLife Foundation, is a 501(c)(3) non-profit advocacy organization dedicated to accelerating the development of treatment and diagnostic opportunities for rare disease patients. The foundation focuses on science-driven public policy and works to improve the clinical trial process and regulatory environment. By bringing together patient advocates, industry leaders, and government agencies, the foundation aims to reduce the time and cost of drug development for rare conditions. Key initiatives include the Rare Disease Legislative Advocates (RDLA) and various programs focused on newborn screening and regulatory reform.