Rare Awareness Radio

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  • Resumen

  • Shedding light on underrepresented diseases and the efforts of non-profit foundations working tirelessly to support those affected.
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Episodios
  • EP 16 Felix Chan

    EP 16 Felix Chan
    May 10 2025
    In this powerful episode of Rare Awareness Radio, we sit down with Dr. Felix Chan, Assistant Professor of Pharmacology at the University of Birmingham and a leading voice in rare epilepsy research. Dr. Chan shares his remarkable journey from Indonesia to the U.K. and U.S., and how a life-changing encounter with a patient during his Ph.D. sparked his mission to better understand the devastating impact of rare epilepsies like CRELD1. We explore the multi-organ effects of this ultra-rare genetic condition, the importance of metabolic research in epilepsy, and how Dr. Chan’s lab is using patient-derived cell models, dietary approaches, drug repurposing, and even gene therapy to uncover new treatment possibilities. More than just a researcher, Dr. Chan is a fierce advocate for patient engagement, public policy change, and international collaboration. He reminds us that rare disease research can unlock insights that benefit the entire medical community. 🔬 Topics covered include: What makes CRELD1 so complex and urgent to study The role of metabolism and nutrition in rare epilepsies The importance of cross-disciplinary and global collaboration Patient-led research and the UK’s PPIE (Patient and Public Involvement and Engagement) model Advocacy and raising awareness with policymakers and scientists alike 🎧 Listen now to learn how one researcher’s global journey is helping to unlock hope for families around the world.
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    28 m
  • EP 15 Dana Brenner

    EP 15 Dana Brenner
    Apr 27 2025
    In this episode of Rare Awareness Radio, we sit down with Dana Brenner, a passionate advocate, parent, and community leader from CRELD1 Warriors. Dana shares her extraordinary journey navigating the complex world of rare disease diagnosis for her son Ray — a journey that spanned nearly a decade before discovering the cause: a newly identified mutation in the CRELD1 gene. Dana opens up about the challenges of raising a child with an undiagnosed condition, the gaps in access to genetic testing and care, and the critical role that parent communities play in driving research, advocacy, and support. She also speaks candidly about broader systemic issues impacting rare disease families and how we can work together to push for change. Through her work with CRELD1 Warriors, Dana is not only helping newly diagnosed families find hope and community, but she is also helping reshape how information and resources are shared in the rare disease landscape. This is a conversation about resilience, empowerment, and the transformative power of connection. If you're part of the rare disease community — or simply want to learn more about how families are creating change — you won't want to miss this episode. 🎙️ Learn more about CRELD1 Warriors: https://www.creld1.com/ 🌟 Follow Rare Awareness Radio for more stories of courage and community. #RareDisease #RareAwarenessRadio #CRELD1 #Advocacy #RareDiseaseCommunity #PatientAdvocacy
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    44 m
  • EP 14 Jonathan Vargas

    EP 14 Jonathan Vargas
    Apr 20 2025
    Fighting for Juju – A Father's Mission to Raise Awareness for CLN2 Batten Disease In this powerful episode of Rare Awareness Radio, we sit down with Jonathan Vargas, co-founder of Juju and Friends: The CLN2 Warrior Foundation. Jonathan shares his family's emotional journey after his son, Juju, was diagnosed with CLN2 Batten disease—a rare, neurodegenerative condition. From heartbreaking hospital stays to launching a nonprofit advocacy group, Jonathan’s story is one of resilience, relentless love, and the drive to make a difference not just for his own child, but for families everywhere facing rare diseases. 🎙️ Don’t miss this heartfelt conversation about advocacy, hope, and the power of never giving up. 🔗 Learn more: https://give.rarevillage.org/campaign/juju-and-friends-cln2-warrior-foundation/c386658 #RareDiseaseAwareness #CLN2 #BattenDisease #RareAwarenessRadio #ParentAdvocate #JujuAndFriends #DisabilityAdvocacy #HopeForJuju
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    22 m
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