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The latest news from PTC

  1. Taking Control of Her Huntington’s Disease Story

    Evonne feels empowered by being an ambassador for Huntington's disease. 
    Rare Disease Community, Rare Journeys
    May 16, 2025
    reading time 1 minute
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  2. Celebrating Those Who Care for Others

    As November ushers in a season of gratitude, it also brings with it National Caregivers Month – a time to recognize and celebrate the unsung heroes who dedicate their lives to caring for others, particularly those in the rare disease community. These individuals, often family members or close friends, play an invaluable role in supporting…
    Rare Disease Community
    November 21, 2024
    reading time 2 minutes
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  3. Caregiving at a Young Age

    Laci shares what it was like to be a caregiver at a young age for someone with Huntington’s disease.
    Rare Disease Community, Rare Journeys
    November 14, 2024
    reading time 1 minute
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  4. Autumn’s Huntington’s Disease Diagnostic Journey

    Londen shares her story as the mother & caregiver of Autumn, who has juvenile Huntington’s disease.
    Rare Disease Community, Rare Journeys
    November 14, 2024
    reading time 1 minute
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  5. 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
    reading time 1 minute
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  6. Highlighting Voices of the HD Community

    In honor of Huntington’s disease (HD) Awareness Month, we are highlighting inspiring and impactful voices from the HD community. Watch the video below to learn more about this rare, hereditary, genetic disorder of the central nervous system, and hear from the global community about their hope for the future of HD.
    Rare Disease Community
    May 15, 2024
    reading time 1 minute
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  7. 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
    reading time 3 minutes
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  8. Jenna’s Huntington’s Disease Story

    In this issue of Patient Voices, Jenna shares her journey with HD.
    Rare Disease Community, Rare Journeys
    May 8, 2023
    reading time 2 minutes
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  9. B.J. Viau: Turning Hope into Help for the Huntington’s Disease Community

    B.J. Viau is a lifelong Huntington’s disease (HD) advocate and has served as Board Chairman of the Huntington’s Disease Youth Organization (HDYO). The following article was contributed to the PTC Newsroom to help spread awareness about HD. Follow him on Twitter @BJsView. Do you have a rare disease story to share? Contact our news team…
    Rare Disease Community
    May 6, 2021
    reading time 2 minutes
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