Épisodes

  • 213: An Interview With Andrea Wilson-Woods, Founder of Blue Faery, a Nonprofit That Advocates for Patients With Hepatocellular Carcinoma
    Feb 24 2026

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrea Wilson-Woods, founder of Blue Faery: The Adrienne Wilson Liver Cancer Association—a nonprofit that advocates for patients with hepatocellular carcinoma.

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    13 min
  • 212: An Interview With Dr. Michael Schilsky of the Yale School of Medicine, and an Expert on Wilson Disease
    Feb 17 2026

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Michael Shilsky, MD, of the Yale School of Medicine, on potential therapies for Wilson disease.

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    11 min
  • 211: An Interview With Yen Chen, PhD, on Brain Fog Among People With Scleroderma
    Feb 11 2026

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Yen Chen, PhD, of the University of Michigan, on the subject of cognitive dysfunction or "brain fog" among people with scleroderma.

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    12 min
  • 210: An Interview With Dr. Aleksander Krag on Diagnosing and Treating Alpha-1 Disease
    Feb 2 2026

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Danish hepatologist Aleksander Krag, MD, PhD, on the diagnosis and treatment of alpha-1 antitrypsin deficiency (AATD).

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    12 min
  • 209: An Interview With Vesna Aleksovska, a Rare Disease Patient Advocate in North Macedonia
    Jan 28 2026

    Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Vesna Aleksovska, chair of the nonprofit organization Life With Challenges. Aleksovska, who has Gaucher disease, advocates for all rare disease patients in North Macedonia, a former Yugoslav republic.

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    20 min
  • 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