エピソード

  • 211: An Interview With Yen Chen, PhD, on Brain Fog Among People With Scleroderma
    2026/02/11

    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 分
  • 210: An Interview With Dr. Aleksander Krag on Diagnosing and Treating Alpha-1 Disease
    2026/02/02

    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 分
  • 209: An Interview With Vesna Aleksovska, a Rare Disease Patient Advocate in North Macedonia
    2026/01/28

    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 分
  • 208: An Interview With Wesley Michael, Founder of Rare Patient Voice
    2026/01/21

    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 分
  • 207: An Interview With Katharine Provencher, Director of Patient Advocacy at IgG4Ward!
    2026/01/12

    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 分
  • 206: An Interview With Cecilia Dueñas, PsyD, on Discrimination and Stigma She Encountered Before Getting Diagnosed With PBC
    2026/01/05

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

    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 分
  • 204: An Interview With Jana Monaco, a NORD Patient Ambassador From Virginia
    2025/12/22

    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 分