Épisodes

  • 208: An Interview With Wesley Michael, Founder of Rare Patient Voice
    Jan 21 2026

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Wesley Michael, founder of Rare Patient Voice. Since 2013, RPV has offered patients and caregivers opportunities to share their input with companies developing products to improve lives.

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    8 min
  • 207: An Interview With Katharine Provencher, Director of Patient Advocacy at IgG4Ward!
    Jan 12 2026

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Katharine Provencher, director of patient advocacy at IgG4Ward!, a nonprofit that advocates for patients and caregivers affected by IgG4-RD.

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    11 min
  • 206: An Interview With Cecilia Dueñas, PsyD, on Discrimination and Stigma She Encountered Before Getting Diagnosed With PBC
    Jan 5 2026

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Cecilia Dueñas, PsyD, on the PBC Research Foundation, and the discrimination and stigma she faced for years before getting diagnosed with the disease.

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    12 min
  • 205: An Interview With Sickle Cell Disease Patient Advocate Golie-Lorenzo Green
    Dec 30 2025

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Golie-Lorenzo Green, whose lifelong battle with sickle cell disease led him to advocate for others with the debilitating illness.

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    13 min
  • 204: An Interview With Jana Monaco, a NORD Patient Ambassador From Virginia
    Dec 22 2025

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jana Monaco, a NORD patient ambassador from Virginia who's made nationwide newborn screening her life's mission.

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    15 min
  • 203: An Interview With Dr. Matthew Might on How AI Could Transform Genome-Guided Medicine
    Dec 17 2025

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Alabama computer scientist Matthew Might, PhD, on how his son's death from a rare genetic disease led him to become an expert in AI and precision medicine.

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    11 min
  • 202: An Interview With Dr. Sarah Chang on the Patient and Caregiver Burden of TK2d
    Dec 8 2025

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sarah Chang, PhD, about the patient and caregiver burden associated with the ultra-rare mitochondrial disease TK2d.

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    10 min
  • 201: An Interview With Rheumatologist Jinoos Yazdany on the Dangers of Artificial Intelligence
    Dec 3 2025

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews rheumatologist Jinoos Yazdany, MD, on the potentially catastrophic medical, ethical and legal consequences of relying too much on AI.

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    17 min