Registration is now open!

Registration fee includes all conference plenary and breakout sessions as well as Thursday night welcome dinner, Friday morning breakfast, lunch and snacks, Saturday breakfast, lunch, snacks and dinner and dance party.

Exciting Updates for 2026:

• Our Kids Zone has expanded and now welcomes all children, 12 and under, including newborns to toddlers and up.
• A low-cost registration fee is available for kids (0-12) and teens (13-17), with no added expense for the Kids and Teen Zone! Please note that conference registration is required for each child to participate in the Kids and Teen Zones.
• And new this year: the Pheast Dinner is free and open to attendees with PKU ages 13 and older. Ages 13 – 17 will dine on property, and ages 18+ will dine off property. Attendees may register a partner or spouse to join the adult Pheast for an additional fee.

The hotel and conference will be held at the Westin Chicago Lombard hotel in Lombard, IL. We have negotiated a discounted room rate of $149.00 plus tax per night at this hotel. Once you register for the conference, NPKUA will provide the room booking link via email. Bookings are available on a first-come, first-served basis.

Deadline for discounted rate is Tuesday, June 23, 2026 or until the NPKUA room block is filled, whichever comes first. The discounted rate of $149 night plus tax is offered before and after the conference (from Tuesday, July 14 – Monday, July 20) if you would like to extend your stay. 

*Please note that the meeting agenda is still being developed and is subject to change

Throughout the conference, there will be opportunities to meet with fellow PKU community members, network with colleagues and meet with exhibitors. See an overview of the meeting agenda below:

Thursday, July 16, 2026

• 2:00 pm – 5:00 pm: Sponsor Session; subject to confirmation
• 6:30 pm – 8:30 pm: Welcome Reception and Buffet Dinner

Friday, July 17, 2026

• 8:00 am – 9:00 am: Breakfast
• 9:00 am – 9:30 am: Welcome and Keynote Speaker
• 9:30 am – 12:30 pm: Morning Plenary Sessions
  • Topics will include:
    • Updates in PKU treatments and clinical development
    • Navigating PKU across the spectrum of severity
• 12:30 pm – 1:30 pm: Lunch
• 1:30 pm – 6:00 pm: Breakout Sessions
  • Concurrent sessions featuring topics, such as:
    • Navigating mental health and PKU
    • Transition of care from teens to adulthood
    • Maternal PKU and women’s health
    • Insurance navigation and advocacy
    • Aging and PKU
    • Community fundraising 101 workshop
    • Managing movement and exercise with PKU
• 6:30 pm – 8:30 pm: Pheast Dinners, Dinner on Your Own
  • Young adult Pheast (ages 13-17) and adult Pheast (18+) for teens and adults with PKU.
    • Attendees may register a partner or spouse to join the adult Pheast for an additional fee.

Saturday, July 18, 2026

• 8:00 am – 9:00 am: Breakfast
• 9:00 am: NPKUA Updates
• 9:30 am – 12:30 pm: Morning Plenary Session
  • Topics will include:
    • Gene therapy 101 and advances in PKU
    • Home Phe monitor updates
    • Navigating travel and PKU
• 12:30 pm – 1:30 pm: Lunch
• 1:30 pm – 4:00 pm: Breakout Sessions
  • Concurrent sessions (repeated from Friday), featuring topics, such as:
    • Navigating mental health and PKU
    • Transition of care from teens to adulthood
    • Maternal PKU and women’s health
    • Insurance navigation and advocacy
    • Aging and PKU
    • Community fundraising 101 workshop
    • Managing movement and exercise with PKU
• 4:00 pm – 5:00 pm: Cohort Connection Time
• 5:00 pm – 6:00 pm: Scientific Poster Session and Networking
• 6:30 pm – 9:00 pm: Celebration Dinner and Dance Party

Sunday, July 19, 2026

• 8:00am – 11:00am: Sponsor Session; subject to confirmation
• Breakfast on Your Own and Departures

For individuals with PKU attending the conference, NPKUA will offer low-protein options at all meals and snack breaks, complete with protein counts. To support advance meal planning, the full menu and corresponding protein counts will be available in the conference app.

Individuals with PKU attending the conference will also have the opportunity to participate in one of two complimentary “Pheast” dinners on Friday evening. The Pheast for ages 13–17 will take place on-site at the hotel, while the Pheast for ages 18+ will be hosted off-site at a nearby restaurant. Complimentary transportation will be provided between the hotel and the restaurant. Attendees may register a partner or spouse to join the adult Pheast for an additional fee.

Both Pheasts offer a wonderful and fun opportunity to connect with fellow community members living with PKU.

The Kids Zone is where the fun begins! New this year, NPKUA will offer infant and baby care, complete with a dedicated napping room. Children from newborn to 12 years old will enjoy games, age-appropriate activities and snacks, all under the supervision of trained Kids Zone staff. Every staff member will have completed both a background check and required training.

Registration for the Kids Zone is required by June 22, 2026. Each child will receive a complimentary Kids Zone t-shirt at check-in.

The Teen Zone is designed for participants ages 13–17 and includes a private hangout room, a dedicated supervisor, programming tailored to their interests, an interactive hands-on cooking class and an off-site activity exclusively for Teen Zone attendees.

Registration for the Teen Zone is required by June 22, 2026. Each teen will receive a complimentary Teen Zone t-shirt at check-in.

How do I get to the Westin Chicago Lombard Hotel?

Chicago O’Hare International (ORD) is the closest airport, located just 16 miles from the Westin Chicago Lombard hotel.

Chicago Midway International (MDW) is 24 miles away from the Westin Chicago Lombard hotel.

Beyond Uber, Lyft or taxis, both airports provide train and bus service options:

• https://www.flychicago.com/midway/tofrom/shuttles/pages/default.aspx
• https://www.flychicago.com/ohare/tofrom/publictransit/Pages/default.aspx

This hotel does not provide shuttle service. However, the conference app will provide a ride share board.

Westin Chicago Lombard onsite parking is free for guests staying at the hotel.

Our exhibit hall will be open and available during select conference hours. Showcase your products, services, research and technologies for our participating patients, parents, caregivers and other medical professionals in attendance.

Interested in exhibiting or sponsoring? Contact Susie Gray, Director of Development at [email protected]

National PKU Alliance (NPKUA) is providing a limited number of need-based lodging grants to community members with a direct connection to PKU to support their attendance at the 2026 Community Conference. The lodging grant consists of one hotel guest room for three nights at the Westin Chicago Lombard hotel.

Lodging grant requests submitted by Tuesday, March 17, 2026 will receive a decision prior to the early registration deadline, allowing families to plan accordingly. If funds remain after this date, applications will be reviewed on a rolling basis until all support has been disbursed.

Our goal is to ensure that as many members of the PKU community as possible are able to participate in this important weekend of learning, connection and support.

For additional information and to apply, please view the grant application below.

Apply Now

What does my registration fee include?

Registration fees include the Thursday night welcome dinner, Friday morning breakfast, lunch and snack (and Pheast dinner for those with PKU), Saturday breakfast, lunch, snacks and dinner and dance party.

Access to all content sessions — from the keynote, plenary and breakout sessions, to the cooking demonstration and science posters sessions. You’ll have lots of opportunities to meet with industry exhibitors and network with others in the PKU community. Upon check-in, you’ll receive a conference bag, name badge and a special branded item. Prior to the conference, NPKUA will send you a link to download our conference app, allowing you to view agendas, network with other attendees and speakers through in-app messaging, receive live announcements and updates, access speaker info, manage digital business cards and participate in interactive features like polls.

Will low-protein food be provided at the Conference?

Both high and low-protein options will be provided at each meal. Each menu, to include meals and snacks, will be carefully prepared for our attendees with PKU. Protein content will be calculated and displayed with each offering. NPKUA will post all meals with protein counts for each meal on the conference app to allow for advanced menu planning.

What should I plan to wear to the Conference?

Casual attire is appropriate for the entire Conference, including the Saturday night dance party. Dressier attire is frequently chosen, but not required, for social events. Attire to keep warm (think layers!) while indoors is recommended since air-conditioned hotels are often chilly.

What amenities are available at the Westin Chicago Lombard hotel?

In-room complimentary WiFi, fitness center, heated indoor pool, whirlpool, Yorktown market/convenience store, Harry Caray’s Italian Steakhouse, Holy Mackerel breakfast restaurant and daily housekeeping. Each guest room is equipped with a small refrigerator. Plus, the Westin hotel chain is known for its “heavenly beds.”

What is there to do in Chicago if I wanted to extend my stay?

There is LOTS to do for all ages. Chicago is known for its architecture, museums, restaurants, sports, parks and beaches, theater and wide variety of neighborhood attractions.

https://www.choosechicago.com/

Calling all researchers, clinicians and advocates! We’re now accepting abstract submissions for the Scientific Poster Session during conference. We invite you to share the work helping move PKU progress forward and connect with the PKU community.

Applications are due by April 17, 2026.

Learn More and Apply

We 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 who, over time, have made significant and lasting contributions to the PKU community. This may include professional accomplishments, volunteerism, research, advocacy or any other meaningful way they have gone above and beyond in service to individuals and families affected by PKU.

Examples of honorees may include:

• A medical professional at the pinnacle or towards the end of their career.
• A researcher who has been recognized for their excellent body of scientific work.
• A member of the community whose long-time service has significantly improved the lives of people with PKU.

Previous awardees:

• 2010: Dr. Richard Koch and Dr. Charles Scriver
• 2012: Phyllis Acosta and Virginia Schuett; Louis Wolfe (Pioneer Award)
• 2014: Dr. Harvey Levy
• 2016: Dr. Rani H. Singh
• 2018: Dr. Barbara Burton; Dr. Robert Guthrie (Pioneer Award)
• 2020: no award
• 2022: Dick Michaux
• 2024: Scott Pelley

To nominate a deserving individual for the 2026 PKU Hero Award, please complete this form.

Nomination deadline: May 1, 2026