Épisodes

  • 156: An Interview With Dr. James Bussel on Fetal and Neonatal Alloimmune Thrombocytopenia (FNAIT)
    Feb 5 2025

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews James Bussel, MD, emeritus professor of pediatrics, medicine, and obstetrics and gynecology at New York's Weill Cornell Medicine. The topic of their discussion is nipocalimab as a potential treatment for fetal and neonatal alloimmune thrombocytopenia (FNAIT).

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    13 min
  • 155: An Interview With Rigoberto Garcia, Executive Director of the Hemophilia Foundation of Southern California
    Jan 31 2025

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Rigoberto Garcia, executive director of the Hemophilia Foundation of Southern California, about the difficulty minorities—especially undocumented Hispanics—have in accessing treatment for their bleeding disorders.

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    15 min
  • 154: An Interview With AATD Patient Kristin Hatcher of the Global Liver Institute
    Jan 24 2025

    Larry Luxner, senior correspondent for Rare DIsease Advisor, interviews Kristin Hatcher, director of pediatric and rare diseases at the Global Liver Institute. Hatcher has both alpha-1 antitrypsin deficiency (AATD) and Von Willebrand disease, a rare clotting disorder.

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    13 min
  • 153: An Interview With Terry Jo Bichell, PhD, Founder and Director of CombinedBrain
    Jan 17 2025

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Terry Jo Bichell, PhD, founder and director of CombinedBrain, which advocates for patients with 110 neurogenetic diseases. Dr. Bichell is part of a panel that's studying how the US Food and Drug Administration can do a better job of speeding up clinical trials and becoming more transparent about its decisions.

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    16 min
  • 152: An Interview With Erin Collins, Founder of the Chasing Rainbows Foundation
    Jan 6 2025

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Erin Collins, founder of the Chasing Rainbows Foundation in North Carolina's Outer Banks. The charity raises awareness of HDFN and other rare pregnancy-related diseases.

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    15 min
  • 151: An Interview With NMOSD Expert Dean Wingerchuk, MD, of the Mayo Clinic
    Jan 2 2025

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Dean Wingerchuk, MD, speaks on the potential for treating neuromyelitis optica spectrum disorder (NMOSD) with stem-cell therapy.

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    10 min
  • 150: An Interview With Beloved Huntington Disease Activist Jimmy Pollard
    Dec 27 2024

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jimmy Pollard, who for the past 38 years has advocated on behalf of people around the world affected by Huntington disease.

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    12 min
  • 149: An Interview With Clinical Psychologist Rosalind Kalb, PhD, of Can Do-MS
    Dec 18 2024

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews clinical psychologist Rosalind Kalb, lead senior programs consultant for Can-Do MS, a Colorado-based nonprofit health and wellness organization.

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    14 min