The Hairy Cell Leukemia Foundation has the mission to improve outcomes for patients with hairy cell leukemia through research, by advancing knowledge about HCL among oncologists and hematologists, and by providing educational resources and comfort to patients and their families. Our organization has its roots in a volunteer patient-led group founded in the 1980s. They developed a patient network, a meaningful accomplishment during the pre-Internet era. In 2008, an international group of experts in HCL management met to discuss areas for collaboration to advance the treatment and management of HCL. They formed the Hairy Cell Leukemia Consortium with an emphasis in scientific research and established a comprehensive web site to inform patients and their physicians about HCL. These two groups ultimately merged, becoming today’s Hairy Cell Leukemia Foundation. This merger brought each organization’s core competencies of strong patient relationships and research acumen together under one umbrella, resulting in an organization positioned to move the needle in discovery and positively impact patients.