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 [email protected]
Save the Date for our 2026 events:
Lifting the Limits for PKU – Pennsylvania
Philadelphia, PA | Saturday, October 10, 2026 Visit Website
Lifting the Limits for PKU – North Carolina
Durham, NC | Friday, November 13, 2026 Visit Website
NPKUA Conferences
NPKUA’s Community Conferences are our largest PKU gathering in the country! 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.
Learn more and register for NPKUA’s 2026 Community Conference, July 16-19 in Lombard, IL!
Have an event to add to our calendar?
Events
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Join us for this month’s community calls to share stories, build connections and discuss topics important to you! To register for a session, please email [email protected]. |
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Join us for this month’s community calls to share stories, build connections and discuss topics important to you! To register for a session, please email [email protected]. |
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Join us for this month’s community calls to share stories, build connections and discuss topics important to you! To register for a session, please email [email protected]. |
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Join us for this month’s community calls to share stories, build connections and discuss topics important to you! To register for a session, please email [email protected]. |
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Join us for an informative and practical webinar all about summer camp options for children and teens with PKU. Led by the experienced team at Camp PHEver, this session willContinue reading “April PKUniversity Webinar | Friendship, Fun and PKU: Inside the PKU Camp Experience” |
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