National PKU Alliance Email Format
Non-profit OrganizationsVirginia, United States11-50 Employees
The National PKU Alliance is a nonprofit organization that serves as a national voice for people affected by phenylketonuria (PKU), coordinating advocacy and support for the PKU community. Founded in 2008 by parents, grandparents, and individuals, it aims to elevate awareness and influence policies relevant to PKU care and resources. It operates within the nonprofit sector to connect patients, families, and clinicians with information and guidance on PKU management. Based in Roanoke, Virginia, the organization is a small entity within the nonprofit sector that serves a national audience. A notable recent development occurred in April 2026 when it participated in Rare Disease Week and had representation on Capitol Hill to advocate for PKU-related issues.