Rare Awareness Radio

著者： Rare Awareness Radio
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  • Shedding light on underrepresented diseases and the efforts of non-profit foundations working tirelessly to support those affected.
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Shedding light on underrepresented diseases and the efforts of non-profit foundations working tirelessly to support those affected.
All rights reserved
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エピソード
  • EP 6 Adam Clatworthy

    EP 6 Adam Clatworthy
    2025/01/05
    In this heartfelt episode, we welcome Adam Clatworthy, founder of CRELD1 Warriors, a UK-based charity supporting families affected by the ultra-rare genetic condition CRELD1. Adam shares his deeply personal journey navigating his children's diagnoses, building a global community, and advocating for awareness and research. Learn how one family's determination creates a lifeline for others in the rare disease community. Listen now to hear Adam’s inspiring story of resilience, community, and hope. For more information, please visit https://www.creld1.com/
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    47 分
  • EP 5 Kate Vinokurov

    EP 5 Kate Vinokurov
    2024/12/10
    Kate Vinokurov is the founder of Cure OTCD, a nonprofit organization dedicated to finding a cure for ornithine transcarbamylase deficiency (OTCD), a rare urea cycle disorder. Kate’s journey began when her son, Etan, was diagnosed with this life-altering condition shortly after birth. Determined to improve his quality of life and that of others affected by OTCD, Kate transformed her personal challenges into a mission to drive change. Through Cure OTCD, Kate focuses on advancing critical research, raising awareness, and fostering patient advocacy. The organization collaborates with leading scientists, healthcare providers, and research institutions worldwide to accelerate the development of therapeutic solutions. Kate’s advocacy extends beyond her nonprofit, sharing her story and connecting with the rare disease community through her platform SaveEtan.com, where supporters can learn more, donate, and stay updated on the latest advancements in the fight against OTCD. Driven by hope and a deep love for her son, Kate continues to inspire others with her relentless pursuit of a brighter future for families impacted by rare diseases. Visit SaveEtan.com to learn how you can support this vital cause.
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    35 分
  • EP 4 Jill Hawkins

    EP 4 Jill Hawkins
    2024/12/02
    FAM177A1 Research Fund is a nonprofit organization that Jill founded to support the FAM177A1 community and accelerate the development of treatments for FAM177A1 Disorder, a rare genetic disease that affects her two children, Charlotte and Cooper. As the founder and president, Jill oversees the fund's operations, fundraising, and partnerships, working with researchers, clinicians, biotech companies, and other rare disease stakeholders. She also shares her family's journey and raises awareness about FAM177A1 Disorder through various podcasts, panels, and publications. Jill has a strong background in psychology, with a bachelor's degree from the University of North Carolina at Chapel Hill and a master of education from the University of Washington. She worked as a school psychologist for several years before dedicating her time to the care of her children and the FAM177A1 Fund. Jill is passionate about improving the lives of all rare disease patients and families. She is a proud Buffalo, NY native who lives in the Pacific Northwest with her husband Doug and their three children. For more information, please visit https://www.curefam.org/
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    33 分

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