Rare Awareness Radio

By: Rare Awareness Radio
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  • Summary

  • Shedding light on underrepresented diseases and the efforts of non-profit foundations working tirelessly to support those affected.
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Episodes
  • EP 7 Zeke and Chanin Zaragoza

    EP 7 Zeke and Chanin Zaragoza
    Jan 19 2025
    In this powerful episode of Rare Awareness Radio, we welcome Chanin Zaragoza and her son Zeke, who share their inspiring journey navigating life with Opsoclonus-Myoclonus-Ataxia Syndrome (OMS). Diagnosed at just three years old, Zeke's path has been marked by resilience, determination, and unwavering faith. Zeke’s incredible achievements, including playing Division 1 football at Oklahoma State University, defy expectations and showcase the power of hope and perseverance. Alongside his mother, Chanin, Zeke has turned his personal story into a platform for advocacy, inspiring countless others affected by rare diseases. Together, they discuss the challenges of diagnosis, the role of community and faith, and their ongoing mission to bring awareness to OMS and support other families facing similar battles.
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    34 mins
  • EP 6 Adam Clatworthy

    EP 6 Adam Clatworthy
    Jan 5 2025
    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 mins
  • EP 5 Kate Vinokurov

    EP 5 Kate Vinokurov
    Dec 10 2024
    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 mins

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