Join us.
As a rare, “orphan” disease, we rely on the PKU community and their network of friends, family and colleagues to support our mission. Our unique events not only raise funds towards PKU research and programming. They provide opportunities for connection and belonging for individuals with PKU and their families and caregivers. Your participation is vital to the PKU Community and invaluable to the NPKUA.
Lifting the Limits
Lifting the Limits for PKU are regional fundraising events that bring communities together with the common goal of raising funds to support PKU research and programming.
Please consider hosting an event, such as a gala or other larger-scale event in your area. This is an opportunity for you to make a difference in the lives of those with PKU and the families who love them.
Volunteers are the key to any Lifting the Limits event. However, you will not be hosting and planning alone! Not only do we encourage you to recruit a committee of people to help, the NPKUA will be right by your side to ensure your event is successful. Working together, we will get to the day that when someone hears, “Your child has PKU,” those words are immediately followed by, “but there is a cure.”
For more information about how you can get started with a Lifting the Limits for PKU event in your area, contact Blair Giannini, Director of Events, at blair@npkua.org
San Diego Lifting the Limits for PKU (9.5.25)
New York City Lifting the Limits for PKU (10.24.25)
NPKUA Conferences
The NPKUA Conferences are one the largest events for the PKU community in the world. Anyone who has been touched in some way by PKU is welcome, including individuals with PKU and their families/caregivers, industry partners and leading experts in the field of PKU research, clinical care, nutrition and advocacy. Since 2010, several thousand attendees from many states and countries have come together to share information, develop lasting friendships and make deep connections.
The Community Conferences are family-friendly and have something for everyone:
- Updates about cutting-edge PKU research
- Stimulating panels and discussions
- Networking time
- The Kids Zone, a supervised and activity-rich onsite camp
- Hear from industry partners on therapies, trials and food and formula
- Much, much more…
These Community Conferences are an opportunity to reconnect with friends and make new ones. You’ll benefit from being with others who truly understand the struggles and triumphs of living with PKU. You will find an oasis of support and reaffirm (or discover) that you are not alone on your PKU journey.
2025 Community Conference
NPKUA is hosting On the Horizon: 2025 Regional Community Conference. This one-day conference will be held in San Diego on Saturday, September 6th, 2025.
Location: San Diego Hilton Del Mar
Date: Saturday, September 6, 2025
Time: 8:00 am – 4:00 pm PST
We have a hotel block for Thursday, September 4th through Sunday, September 7th at the San Diego Hilton Del Mar. The link to the hotel block will be provided in your registration confirmation email.
2026 Community Conference
The 2026 Community Conference will take place at the Chicago Westin Lombard in Lombard, IL on Thursday, July 16 – Sunday, July 19, 2026. Save the date, and stay tuned for more information!
See our calendar below to learn about the events at the NPKUA and in the broader PKU community!
Have an event to add to our calendar?
Calendar of Events
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