The latest news from PTC

Amanda, who lives with phenylketonuria (PKU), and her mom, Jill, share what it’s like to manage the condition every day. From navigating meals to preparing for situations that aren’t always PKU-friendly, Amanda describes the planning, resilience and determination it takes to stay on track – supported by family, friends and the PKU community. She also…

Kailey, who lives in Louisiana with her boyfriend and two dogs, was diagnosed with Friedreich’s ataxia (FA) after years of concerning symptoms and multiple kinds of testing. She describes FA as feeling like your brain and body aren’t communicating. Despite the challenges of living with FA, she finds strength in the FA community and admires…

April is a California mom and Nana of three who was diagnosed with Huntington’s disease (HD) after learning her father carried the gene. For April, it was difficult to find, and afford, genetic testing, and receiving a positive result felt abrupt and isolating. After her diagnosis, she had to step away from the fast-paced Emergency…

When asked why it’s important to recognize Women’s History Month (WHM) in March, women leaders at PTC agree: WHM is a significant moment in time to honor the achievements and impact of women across history. “Women’s History Month demonstrates the vast contributions women have made across all areas – politics, music, fine arts, drama, literature,…

PTC has been named a 2026 Gallup Exceptional Workplace Award winner. This is the company’s fifth time earning this important recognition, and it reflects the culture we have cultivated by enabling our people do their best work by leading with their Strengths. At PTC, we use Gallup’s CliftonStrengths to build a shared Strengths language that…

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…

In rare disease, progress starts with listening. Rare Disease Day is an opportunity to recognize the millions of people worldwide living with rare conditions — and to reflect on what it truly means to support them. At PTC, support and meaningful impact begins by listening to the people who live this reality every day. It’s those who are…

Tiffany, a mother of two who lives with Friedreich’s ataxia (FA), opens up about the challenges of navigating life with a physical disability while embracing her identity as a “whole person” – someone who is more than just her FA diagnoses. In these videos, she highlights the importance of community in overcoming obstacles and finding…

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…