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The latest news from PTC

  1. Looking for Life’s Small Miracles

    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…
    Rare Disease Community, Rare Journeys
    reading time 1 minute
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  2. Reaching for the Stars

    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…
    Rare Disease Community, Rare Journeys
    reading time 1 minute
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  3. In This Together

    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…
    Rare Disease Community, Rare Journeys
    reading time 1 minute
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  4. A Family’s Path to Hope 

    Simone was diagnosed with aromatic L-amino acid decarboxylase (AADC) deficiency when he was 12 months old. AADC deficiency is a rare, life-limiting genetic disorder that can cause severe disability from the first months of life and can impact the entire family.  For Simone’s parents, Sabrina and Sebastiano, the path to getting the diagnosis was difficult…
    Rare Disease Community, Rare Journeys
    reading time 1 minute
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  5. The Importance of Sharing Your Story

    For Sam, publishing his first book was nerve-wracking – it chronicled his Friedreich’s ataxia (FA) diagnosis and was therefore very personal. He wasn’t sure what people would think, but he was pleased with the positive reception of his book. Sam is a passionate writer and has since published five more books. In this video, Sam…
    Rare Disease Community, Rare Journeys
    reading time 1 minute
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  6. International PKU Day: Dietary Management with PKU

    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…
    Rare Disease Community
    reading time 1 minute
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  7. Fostering Inclusive Workspaces Though Empathy, Authenticity and Unity

    Our employees bring a wealth of perspectives and ideas, driving innovation and fostering more dynamic teams.   To ensure we have a broad range of voices where decisions are made, we encourage all to lead with authenticity and empathy, which allows people to feel comfortable being vulnerable and safe so they can ask questions. We also…
    Our Culture
    reading time 2 minutes
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  8. Celebrating World Environment Day with Global Tree Planting Initiatives

    At PTC, we strive for excellence in environmental stewardship by making environmental sustainability a top priority across the company. This World Environment Day, we’re highlighting our company-wide efforts to be good citizens of the world and make changes towards becoming a better planet. For the third year in a row, the PTC team in Switzerland…
    Responsibility
    reading time 2 minutes
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  9. Alex’s Day-to-Day with FA

    Alex, who lives with Friedreich’s ataxia (FA), encourages others in the FA community to get involved.
    Rare Disease Community, Rare Journeys
    reading time 5 minutes
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  10. Taking Control of Her Huntington’s Disease Story

    Evonne feels empowered by being an ambassador for Huntington's disease. 
    Rare Disease Community, Rare Journeys
    reading time 1 minute
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