A special thank you to Clarissa Henke, NPKUA’s Advocacy Committee Co-Chair, for representing our PKU community on Capitol Hill during Rare Disease Week with the EveryLife Foundation for Rare Diseases. Reflecting on her experience in...
Read MoreThe NPKUA Psychosocial Committee — made up of dedicated mental health practitioners — is excited to share this quarterly update with our PKU community. In each edition, they will explore topics related to mental health,...
Read MoreMeet Nicole, one of NPKUA's fabulous peer mentors! Nicole is a 30-year-old nurse who lives in Oregon with her wife. Nicole planned their wedding last year while balancing travel, work and PKU! She loves to...
Read MoreFOR IMMEDIATE RELEASEROANOKE, Va., — National PKU Alliance (NPKUA) announced today that it has acquired the BioPKU database, a widely used scientific resource containing anonymized genetic information from individuals with phenylketonuria (PKU). Originally developed by...
Read MoreWe invite our community to nominate candidates for the PKU Hero Award, which will be presented at the 2026 NPKUA Community Conference, held July 16–19, 2026, in Lombard, IL. The PKU Hero Award recognizes individuals...
Read MoreNPKUA’s sixth annual Scientific Conference took place February 26–28, 2026, in New Orleans, LA, bringing together leaders from across the PKU community. More than 100 invited healthcare providers, researchers, industry partners and regulatory representatives gathered...
Read MoreMeet this month’s community spotlight, Elinor! Elinor is a 15-year-old who was diagnosed with PKU at birth and began Kuvan therapy at just seven months old. “Living with PKU makes my daily routine look different...
Read MoreMeet Suzanne, a longtime mentor with the NPKUA Mentor Program! Suzanne’s family’s journey with PKU was initially shaped by her older brother, who was diagnosed late and, as a result, suffered brain damage. Because of...
Read MoreShare how PKU affects your quality of life through the PKU Patient Registry. Living with PKU impacts daily life, and your experience deserves to be heard. Complete quality-of-life surveys in the PKU Patient Registry by...
Read MorePeople affected by phenylketonuria (PKU) unite to describe challenges of managing PKU and aspirations for the future of PKU treatment Washington, DC – December 5, 2024 – The National PKU Alliance (NPKUA), in collaboration with...
Read More
