National PKU Alliance

The National PKU Alliance (NPKUA) is the only national organization dedicated solely to supporting individuals and families affected by phenylketonuria (PKU). They work towards expanding PKU research and accelerating the timeline for a cure by investing in peer-reviewed and targeted research. They provide education and support to people living with PKU. They are the national voice for advocacy at the federal level – at the NIH, FDA and in the halls of Congress. The NPKUA was formed in 2008 by parents, grandparents, and individuals across the country. They are the first national non-profit organization to unite adults, families, regional and statewide PKU organizations, the medical community and industry to make a difference in the lives of people with PKU.