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The latest news from PTC

  1. Improving the Transition from Pediatric to Adult Care in Duchenne

    PTC research highlights opportunities to improve the transition experience for young adults living with Duchenne In 2023, PTC supported a research project conducted by a patient-focused consultancy Redline Strategic exploring the experience for teenagers, young adults and caregivers living with Duchenne muscular dystrophy (Duchenne) as they transition from pediatric care to adult care. The research…
    Rare Disease Community
    August 29, 2024
    3 minutes
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  2. Raising Voices for Duchenne

    World Duchenne Awareness Day is on Sept. 7. In honor of this year’s theme, “raise your voice for Duchenne”, we are highlighting remarkable individuals in the Duchenne community who are doing just that: using their voices to raise awareness of Duchenne, advocating for those living with the condition and inspiring the community to join them…
    Rare Disease Community
    August 27, 2024
    2 minutes
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  3. Navigating Clinical Trials

    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 Community
    May 20, 2024
    1 minute
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  4. In it Together: Rare Disease Day 2024

    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…
    Rare Disease Community
    February 21, 2024
    3 minutes
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  5. Take on Duchenne Podcast: Nutrition and Duchenne

    In this podcast episode we are discussing the topic of Nutrition and Duchenne with our guest speaker, Dr. Kindann Fawcett, Behavioral Health Scientist, Dietitian and Caregiver to her son with Duchenne Muscular Dystrophy.  Our conversation with Dr. Kindann Fawcett explores; Tune in to learn more about this topic. Visit the Take on Duchenne: North America…
    Rare Disease Community
    December 19, 2023
    2 minutes
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  6. Luke & Elliott: Two Paths to Duchenne

    The bond between Luke and Elliott, who lives with Duchenne, is the foundation for new life paths.
    Rare Disease Community, Rare Journeys
    December 5, 2023
    3 minutes
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  7. Jessica’s Many Crowns and Titles – Including Duchenne Advocate

    Jessica uses her platform and titles, including Mrs. NY International, to advocate for Duchenne.
    Rare Disease Community, Rare Journeys
    November 21, 2023
    3 minutes
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  8. PTC Team in Brazil Earns Three Awards

    The PTC team in Brazil recently won three awards for their creative and impactful projects highlighting the rare disease community. First Up: The documentary series, “Living is Rare” (“Viver é Raro”) won the SABRE América Latina 2023 Award. The series was recognized with the award in the Public Education category. The world’s leading award in Public Relations, SABRE celebrates creative…
    Our Culture, Rare Disease Community
    November 20, 2023
    2 minutes
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  9. Improving Workplace Outcomes for People With Disabilities

    Felix channels his passion and studies to changing the workplace for people with disabilities.
    Rare Disease Community, Rare Journeys
    November 2, 2023
    2 minutes
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  10. Supporting the Spanish-Speaking Community

    The Patient Engagement (PE) team at PTC is passionate about education and support of a family’s rare disease journey, and this commitment includes support for patients and their families in the Spanish-speaking community. The team began meeting with the Spanish-speaking community in Puerto Rico more than five years ago, and realized there were minimal resources…
    Rare Disease Community
    November 1, 2023
    2 minutes
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