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
経済学
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エピソード
  • EP 9 Sunitha Malepati

    EP 9 Sunitha Malepati
    2025/02/16
    Join us for a compelling episode of Rare Awareness Radio as we welcome Sunita Malipadi — attorney, advocate, and mother — who shares her powerful journey through the rare disease world. 🌿 Sunita's daughter was born with a mutation on the CACNA1A gene, leading to developmental challenges and a two-and-a-half-year diagnostic odyssey. Instead of giving up, Sunita turned her family’s experience into action. She co-founded the CACNA1A Foundation and the Buffalo Initiative, leading the charge in patient-driven rare disease research. For more information, please visit https://www.cacna1a.org/ In this episode, Sunita talks about: 🔹 The emotional rollercoaster of their diagnostic journey. 🔹 Why patient-led advocacy is essential for driving innovation. 🔹 The mission of the Buffalo Initiative to tackle the 'valley of death' in genetic medicine. 🔹 Her hopes for a more equitable and accessible research ecosystem. 💙 Follow us for more inspiring stories from the world of rare disease advocacy. #RareAwarenessRadio #RareDisease #GeneticMedicine #CACNA1A #PatientAdvocacy #BuffaloInitiative #HealthcareInnovation
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    39 分
  • EP 8 Yiwei She

    EP 8 Yiwei She
    2025/02/01
    In this powerful episode of Rare Awareness Radio, we sit down with Yiwei She, founder of the TNPO2 Foundation, to discuss her inspiring journey from mathematician and AI professional to rare disease advocate. When her son, Leo, was diagnosed with an ultra-rare genetic condition, Yiwei refused to accept the lack of treatment options. Instead, she launched a foundation dedicated to advancing precision medicine and improving early genetic diagnoses for children with rare diseases. We dive into the challenges of navigating the healthcare system, the groundbreaking role of AI and biotech in drug development, and the fight for equitable access to life-saving treatments. Yiwei also shares the mission behind Project Baby Lion, an initiative designed to accelerate diagnoses and connect families with the right resources. This episode is a must-listen for anyone passionate about medical innovation, rare disease advocacy, and the power of technology to transform lives. 🔗 Learn more about the TNPO2 Foundation: tnpo2.org
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    31 分
  • EP 7 Zeke and Chanin Zaragoza

    EP 7 Zeke and Chanin Zaragoza
    2025/01/19
    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 分
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