“Living Our Best PKU Life” 2026 Community Conference in Chicago
Get help navigating PKU, learn about treatment advances and meet researchers, clinicians and others with PKU
The National Phenylketonuria (PKU) Alliance (NPKUA) will host the “Living Our Best PKU Life” community conference from July 16 to July 19 at The Westin Chicago Lombard.
The 2026 community conference will bring together individuals with PKU and their families, industry partners, researchers and clinicians to learn, share information, develop lasting friendships and make deep connections.
Participants can explore a wide variety of topics, including:
- Gene therapy 101 and advances in PKU
- Navigating mental health and PKU across the spectrum of severity
- Transition of care from teens to adulthood
- Maternal PKU and women’s health
- Managing movement and exercise with PKU
- Insurance and more
Other activities and features will include:
- An expanded and welcoming Kids Zone for children 12 and under, including newborns and toddlers.
- A Teen Zone for participants ages 13to17 with a dedicated supervisor, hands-on cooking classes and other fun activities.
- Low-cost registration fee for kids and teens.
- A “Pheast Dinner” for attendees with PKU ages 13 and older.
Register for the “Living Our Best PKU Life” community conference and see more details about the hotel, conference costs and complete schedule. The early bird rate will apply through March 31 at 10:45 p.m.
You can apply online for help to attend the 2026 PKU conference. A limited number of need-based lodging grants to community members with a direct connection to PKU are available.
For any questions or to get further involved, please contact conference@npkua.org.