Supporting Adults Living with PKU and Their Families

Navigating PKU Educational Program

📅 Saturday, March 28, 2026
⏰ 10:00 AM – 1:00 PM MST

📍 Hilton Garden Inn
7290 Price Road
Tempe, AZ 85283

💻 Virtual attendance available

RSVP Information- To attend either in person or virtually, please RSVP: Aurora Flores  📞 908-202-2080 or email aflores@ptcbio.com

This event is open to individuals living with PKU, their caregivers, and family members, and there is no cost to attend. Complimentary parking is also included for in-person attendees.

Living with Phenylketonuria (PKU) presents lifelong challenges that extend far beyond diet and medical management. From navigating social situations to managing the emotional impact of a rare metabolic condition, individuals with PKU and their families often benefit greatly from education, connection, and community support.

An upcoming educational program called Navigating PKU aims to do just that—bringing together members of the PKU community to learn, share experiences, and gain helpful insights for living well with PKU.

This special program will take place Saturday, March 28, 2026, from 10:00 AM to 1:00 PM MST at the Hilton Garden Inn in Tempe, Arizona, and will also be available virtually for those who cannot attend in person.

A Program Focused on Adults Living with PKU

The presentation, “Facing the Challenges of PKU: A Presentation for Adults Living with PKU,” will explore the emotional and social realities of managing a rare metabolic condition throughout life.

While PKU is often diagnosed in infancy, its impact continues through adulthood. Many adults living with PKU face unique challenges related to maintaining dietary management, navigating social settings, and balancing work, family, and health responsibilities. Programs like Navigating PKU help address these real-life issues by providing practical insights and a supportive environment where individuals can connect with others who understand their experiences.

Expert Perspective from Dr. Al Freedman

The program will feature Dr. Al Freedman, PhD, a licensed psychologist and consultant who has spent more than two decades supporting individuals and families navigating rare conditions. 

Dr. Freedman also brings a deeply personal perspective—he is the father of a child living with a rare disease. Through his work as a therapist and speaker, he has helped countless families better understand the emotional and psychological aspects of managing complex medical conditions.

His presentation will focus on:

• Emotional challenges of living with PKU
• Social and lifestyle considerations for adults
• Strategies for coping and resilience
• The importance of community and support networks

Connecting with the PKU Community

In addition to the educational presentation, the event provides an opportunity for members of the PKU community to connect with one another in person or online. Families attending the Phoenix-area gathering will have time to meet others in the community and share experiences.

A low-phenylalanine meal will be provided for in-person attendees, helping create a comfortable and inclusive environment for individuals managing PKU dietary restrictions.

Events like this play an important role in strengthening the PKU community by reminding individuals and families that they are not alone in navigating this journey.