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The latest news from PTC

  1. DMD: continuum of disease and importance of continuation of care, relating to Cardiopathology

    Dr. Chet Ridall Villa from Cincinnati Children’s Hospital Medical Center specializes in Cardiomyopathy, Heart Failure, and Transplantation and is particularly passionate for taking care of children and young adults with Duchenne muscular dystrophy (DMD), RASopathies, and those in need of ventricular assist device therapy and heart transplant. Together with Dr. Villa in this episode we…
    Rare Disease Community
    June 28, 2022
    2 minutes
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  2. UK Caregiver of the Year Campaigns for Disability and Rare Disease Rights

    Shelley received the Caregiver of the Year 2022 award from the charity Muscular Dystrophy UK.
    Rare Disease Community, Rare Journeys
    June 17, 2022
    3 minutes
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  3. DMD: continuum of disease and importance of continuation of care

    This episode is dedicated to discussing Duchenne Muscular Dystrophy (DMD) continuum of disease and importance of continuation of care in Duchenne Muscular Dystrophy (DMD). Hear from our expert guest speaker, Dr. Mayer from Children’s Hospital of Philadelphia (CHOP) about the recommended DMD standard of care guidelines with regards to ongoing patient management and care. Return…
    Rare Disease Community
    June 16, 2022
    2 minutes
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  4. Feriel Inspires Other Women with Duchenne

    Feriel's Duchenne diagnosis hasn’t stopped her from having a positive outlook.
    Rare Disease Community, Rare Journeys
    June 8, 2022
    2 minutes
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  5. Philip’s Journey to Gold

    Philip is the first person ever with Duchenne to win a gold medal in any event at the Paralympics.
    Rare Disease Community, Rare Journeys
    May 24, 2022
    3 minutes
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  6. An Aspiring Screenwriter Living with Duchenne

    Lizanne wants to increase recognition for disabled people in the acting and film industries.
    Rare Disease Community, Rare Journeys
    May 13, 2022
    2 minutes
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  7. Gabriela Inspires Children to Embrace Their Differences

    Meet Gabriela, a young and talented author of a children’s book, "Timothy’s Magic Wheelchair".
    Rare Disease Community, Rare Journeys
    April 11, 2022
    1 minute
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  8. Dancing for Duchenne Brings Joy to the Community

    Hulda created Dancing for Duchenne to encourage positivity through hard times.
    Rare Disease Community, Rare Journeys
    March 14, 2022
    3 minutes
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  9. Transition to Adult Care in DMD, the Social Perspective

    As more and more boys and young men with DMD are transitioning into adulthood, there is an increasing emphasis on quality of life and psychosocial management. In this episode, we are joined by Sarah Stoney, licensed social worker from Children’s Hospital of Philadelphia for a discussion about considerations and strategies for social aspects of care.…
    Rare Disease Community
    February 1, 2022
    1 minute
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  10. Laura Channels Challenges Into Positivity

    Laura helps others navigate life with Duchenne and live every day like the best day ever.
    Rare Disease Community, Rare Journeys
    January 26, 2022
    2 minutes
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