We believe that all members of our community should be informed, involved, and empowered in their PKU journey. We aim to create intentional interactions within the PKU community and with those who influence decisions affecting our community. We have several programs that support this effort:

Community Calls

The NPKUA’s Community Calls are virtual peer support groups offered to a variety of cohorts within the PKU community. Support Programs

Peer Mentor Program

The NPKUA Mentor Program provides as-needed assistance to individuals affected by PKU in a variety of ways––ranging from a quick phone call or email to weekly check-ins, or on-going text support. Support Programs

Advocacy

As an advocate for patients with PKU, you raise awareness, support policy initiatives, and amplify voices within the PKU community to drive positive change and improve quality of life. There are many ways to make your voice heard! For example, you can:

• Join the NPKUA Advocacy Committee
• Share your story to help others fighting to shape legislations
• Organize around issues that are important to our community.

Learn more about ways to be an advocate here.

Affiliates

The Affiliate Council hopes to inspire state and regional PKU organizations, both new and established, to uplift one another as we all work hand-in-hand to improve the lives of people with PKU while pursuing a cure. Learn more about the NPKUA Affiliate groups here.

Volunteer Program

You can create positive change in the PKU community by volunteering for one of our committees or programs. You’ll also meet new people and grow your skills. Learn about volunteer opportunities and sign up here.