More than 600 members of our PKU community traveled from 39 states and nine countries to join us in Lombard, Illinois, for NPKUA’s Living Our Best PKU Life Community Conference, July 16–19, 2026. The weekend...
Read MoreWe were so proud to recognize Amy Oliver as this year's PKU Hero during NPKUA's community conference weekend in Lombard, IL. The PKU Hero Award recognizes individuals who have made significant and lasting contributions to...
Read MoreInterested in participating in PKU research to help move progress forward? NPKUA offers several ways to stay informed and get involved: Join the PKU Patient Registry When you create a profile in the Registry, you...
Read MorePlanning a summer trip? If you’re flying with medical formula, low-protein foods, cooling packs or other medically necessary items, a little preparation can help make travel smoother. Here are a few helpful tips to keep...
Read MoreMeet Kelci, one of our NPKUA mentors! Kelci is a middle school teacher living in Western Washington with her husband and their two children. Both of Kelci's children, ages 2½ and 4, have PKU and...
Read MoreNeed help understanding your insurance options? NPKUA’s new Insurance Navigator Support Program offers a supportive place to start. Connect with trained volunteer navigators who bring lived PKU experience and practical guidance to help you better...
Read MoreMeet Kelly, one of our NPKUA mentors! Kelly is 26 years old and was diagnosed with classical PKU at birth. One of her three brothers also has PKU, so supporting each other through their “diet...
Read MoreWe are deeply grateful for the dedication, leadership and perspective Lillian Isabella brought to NPKUA throughout her six years of volunteer service. Lillian served on NPKUA’s Board of Directors from January 2020 to December 2025...
Read MoreMeet this month's community spotlight, Susan! Shuishan (Susan Hu) is an adult living with Classical PKU in Maryland. She currently manages 9 grams of natural protein with Palynziq, along with diet and medical formula. Susan...
Read MoreA 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 More
