Thank you for taking care of the PKU community!
Haven’t connected with NPKUA? We’d love to meet you! Use the link below to schedule a meeting with our team to learn more about NPKUA programs and resources:
Stay up to date on the latest NPKUA programs and upcoming events. Email info@npkua.org to subscribe to our quarterly clinician newsletter!
On-Demand CME: PKU Care Insights with Vockley & Longo
Access a free CME session with Dr. Gerald Vockley and Dr. Nicola Longo covering the latest ACMG PKU guidelines, updates on sepiapterin, JNT-517, gene therapy and expert strategies for long-term PKU care.
How to claim your CME credit: After completing the course, click “next,” and you will automatically be redirected to ACMG Genetics Academy. Login to your ACMG account and complete the course evaluation to finalize your credit.
We sincerely appreciate all of your hard work that ensures the health and wellbeing of individuals with PKU and their families. Please see below for our list of NPKUA resources to better support your patients:
Support for Individuals with PKU:
Support Kits: NPKUA offers support kits through various life stages, including newborn, kindergarten and reconnecting with the community. Learn more about each kit and request a kit here.
Maternal PKU Emergency Assistance Program: This program provides low-protein foods to women with PKU who are pregnant or planning to become pregnant with a financial barrier to accessing these foods. This is a clinician-initiated program, and the application form can be found here.
Mentor Program: Through peer connections, the NPKUA Mentor Program provides hope, understanding, resources, guidance, motivation and emotional support to individuals affected by PKU, including adults with PKU, their families and caregivers of children with PKU. More information about this program can be found here or contact Sarah Gallagher, Director of Community Engagement, at sarah@npkua.org to learn more.
Community Calls: NPKUA’s Community Calls are virtual peer support groups offered to a variety of cohorts within the PKU community. They are a place for community members to gather to share experiences, offer encouragement and connect with others who understand the unique challenges of living with PKU. More information about community calls can be found here. RSVP to Sarah Gallagher, Director of Community Engagement, at sarah@npkua.org to be added to the meeting invitation.
PKU Research Opportunities:
PKU Patient Registry: The PKU Patient Registry empowers the PKU community to help shape the future of PKU clinical management and therapies by completing online surveys once per year. Data from the registry can be used to support the development of new therapies, management strategies and clinical guidelines. Learn more about the Registry here.
NPKUA Genetic Testing Program: Participants of the PKU Patient Registry are also eligible to receive no-cost genetic testing through the NPKUA Genetic Testing Program. You can learn more about this program here or email registry@npkua.org to get started.
Patient Education Opportunities:
Insurance Navigation and Support: Learn more about helping patients navigate their health insurance and about PKU-specific patient assistance programs here.
My PKU Binder: This comprehensive binder provides information and tips and tricks for all the life stages of PKU. The complete binder can be found here.
PKUniversity Webinar Series: NPKUA hosts monthly educational webinars for the PKU community. Watch previous webinar recordings on our YouTube page, featuring topics like home Phe monitors, updated PKU guidelines, maternal PKU and more!
Upcoming NPKUA Events:
2026 NPKUA Community Conference: Living Our Best PKU Life: This in-person community conference will take place Thursday, July 16 through Sunday, July 19, 2026, in Chicagoland, IL. Families with PKU, healthcare providers, researchers and community members are invited to attend. You can learn more about the conference and register here!
See all ongoing NPKUA events on the events page here!