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  • Living with XLH - Movement as Medicine
    2025/03/28

    This week, Sandy and Naomi speak with Advanced Exercise Physiologist and Co-Chair International Clinical Exercise Physiology Network, Luke Snabaitis, about exercise as medicine.....

    Topics discussed:

    1. Benefits of movement
    2. Guidelines for exercise
    3. Movement for pain management
    4. Maintaining muscle and connective tissue

    Links mentioned in this episode:

    • www.xlhaustralia.com
    • www.xlhnetwork.org

    This podcast is hosted by ZenCast.fm

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    1 時間 2 分
  • Living with XLH: Three generations
    2024/12/22

    This week, Naomi and Sandy speak with Suzanne, Royce, Angela, Georgia and Eli--three generations, each with unique experiences and perspectives on life with XLH—and life as part of an XLH family!

    Topics discussed:

    1. Growing up with XLH
    2. Parenting a child with XLH
    3. A child's perspective

    Links mentioned in this episode: www.xlhaustralia.com

    This podcast is hosted by ZenCast.fm

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    23 分
  • Living with XLH: Parenting a child with a rare disease
    2024/11/23

    This week, XLH Australia President Sandy Bevc and XLH Australia Vice President Naomi Ford speak with their mothers about their experiences parenting a child with a rare condition.

    Topics discussed:

    1. The journey to diagnosis
    2. Parenting a child with a rare disease
    3. Navigating healthcare and advocacy

    Links mentioned in this episode: www.xlhaustralia.com

    This podcast is hosted by ZenCast.fm

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    38 分
  • Living with XLH: Experiences from XLH India
    2024/10/21

    This week, XLH Australia President Sandy Bevc and Vice President Naomi Ford are joined by Prakalp Sudhakar who is the founder and chair of XLH India.

    Topics discussed:

    1. XLH journey as a spontaneous case
    2. Living healthy
    3. XLH India

    Links mentioned in this episode:

    • http://xlhaustralia.com
    • http://xlhindia.org

    This podcast is hosted by ZenCast.fm

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    19 分