The latest news from PTC

According to EURORDIS, the Rare Disease Day 2026 theme, “More than you can imagine”, reminds us that “rare diseases touch more lives, involve more conditions, and require more action than most people realize.”   In recognition of this powerful global campaign, PTC honors the phenylketonuria (PKU) community by amplifying voices from across the globe. Together, we can raise our voices to shed light on the realities of living with…

Tracy, who lives with phenylketonuria (PKU), is a professional astrophysicist and works at NASA. In her opinion, living with PKU requires discipline to keep on top of managing the condition. “I often wonder if I didn’t have PKU, if I would be an astrophysicist,” Tracy says. “I know there is that little part of me…

Sarah Chamberlin, the mother of a child with phenylketonuria (PKU) and a passionate advocate, shares her journey of turning a challenging diagnosis into an opportunity to create meaningful change for the PKU community.  By channeling her skills into advocacy, she led the transformation of National PKU News to flok, an organization with the mission to…

International PKU Day, led by E.S.PKU (European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria), a patient-driven umbrella organization representing PKU organizations across Europe, is on June 28. This year’s theme, Shades of PKU, seeks to highlight the diverse experiences of people living with PKU. The campaign underscores the complex reality of PKU, emphasizing that it’s…

Kurt shares his dedication to storytelling, encouraging others to find strength in their PKU journeys. 

Emma shares her story about living with PKU and her advice for others.

In honor of International PKU Awareness Day, June 28, members of the community helped us to debunk common myths about PKU. Watch the video below to hear from PKU advocates, healthcare professionals, a person living with PKU and a caregiver as they share the facts: International PKU Awareness Day is a global day hosted by…

Clinical trials provide the medical community with valuable research and data that helps to facilitate the development of new and potentially life-saving therapies. By participating in a clinical trial, you are taking an active role in the development and approval of new medicines and treatments. There is a lot to learn about clinical trials –…

Rare Disease Day, which takes place every year on the last day of February, is a global movement aimed at raising awareness of the 7,000+ rare diseases and more than 300 million people worldwide who live with a rare disease. With our deep experience in the rare disease space for more than 25 years and…

Kevin, who lives with PKU, shares his passion for storytelling.