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PODCAST

Rare Care Podcast

Rare Disease Advisor

Rare Disease Advisor"s Rare Care Podcast features exclusive interviews with experts and stakeholders from the rare disease community.

health & fitness medicine

All Episodes

17:04

An Interview With Heather Landau, MD, on the Latest...

Rare Care Podcast ·

2025/03/06

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews oncologist-hematologist Heather Landau, MD, of Sloan Kettering Memorial Cancer Center in New York City, for National Amyloidosis Awareness Month.

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12:09

An Interview With Dr. Sangeetha Venugopal on the...

Rare Care Podcast ·

2025/02/20

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sangeetha Venugopal, MD, assistant professor of clinical medicine at the University of Miami's Sylvester Comprehensive Cancer Center. Dr. Venugopal speaks on how smoking worsens outcomes for patients with a group of blood cancers known as myelodysplastic syndromes (MDS).

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12:16

An Interview With Andrea Renzi, a Patient Advocate...

Rare Care Podcast ·

2025/02/12

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrea Renzi, a New Hampshire mother and patient advocate whose family has been affected by hemolytic disease of the fetus and newborn (HDFN).

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15:25

An Interview With Rigoberto Garcia, Executive...

Rare Care Podcast ·

2025/01/31

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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13:17

An Interview With AATD Patient Kristin Hatcher of the...

Rare Care Podcast ·

2025/01/24

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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15:32

An Interview With Terry Jo Bichell, PhD, Founder and...

Rare Care Podcast ·

2025/01/17

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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12:18

An Interview With Beloved Huntington Disease Activist...

Rare Care Podcast ·

2024/12/27

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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13:47

An Interview With Jean Elwing, MD, a Pulmonary...

Rare Care Podcast ·

2024/12/03

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jean Elwing, MD, a professor of medicine and director of the Pulmonary Hypertension Program at Ohio's University of Cincinnati.

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09:08

An Interview With Payel Gupta, MD, on the Importance...

Rare Care Podcast ·

2024/11/27

Larry Luxner, senior correspondent for Rare DIsease Advisor, interviews Payel Gupta, MD, on social media platforms such as TikTok, Facebook and YouTube, and their importance in reaching today's public—and fighting online misinformation.

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16:33

An Interview With Anastasia Vishnevetsky, MD, MPH, on...

Rare Care Podcast ·

2024/11/14

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Anastasia Vishnevetsky, MD, MPH, of Massachusetts General Hospital and Harvard Medical School. Dr. Vishnevetsky is heading a groundbreaking clinical trial of the cannabinoid spray nabiximols in treating the symptoms of NMOSD.

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15:41

An Interview With Ignacio Muñoz-Sanjuan, PhD,...

Rare Care Podcast ·

2024/11/05

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ignacio Muñoz-Sanjuan, PhD, the president and founder of Factor-H—a Los Angeles-based nonprofit organization that works to alleviate extreme poverty among people with Huntington disease in Venezuela, Colombia, and Peru.

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16:31

An Interview With Amy Case, MD, Chief Medical Officer...

Rare Care Podcast ·

2024/11/04

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Amy Case, MD, chief medical officer of the Pulmonary Fibrosis Foundation, about the importance of passing the bipartisan Supplemental Oxygen Access Reform (SOAR) Act, which is currently stalled in Congress.

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12:03

An Interview With Steve Van Wormer, Cofounder and...

Rare Care Podcast ·

2024/10/21

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Steve Van Wormer, cofounder and director of the Phaware Global Association. Van Wormer became a patient advocate after his late son, Lucas, was diagnosed with pulmonary hypertension at age 4.

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12:56

An Interview With Drew Harris, MD, Expert on Black...

Rare Care Podcast ·

2024/10/09

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pulmonologist Drew Harris, MD, an associate professor of medicine at the University of Virginia in Charlottesville. Dr. Harris is also medical director of the Black Lung Program at Stone Mountain Health Services, in the heart of southwestern Virginia's coal-mining industry.

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09:45

An Interview With Karin Hoelzer, DVM, PhD, Senior...

Rare Care Podcast ·

2024/09/18

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Karin Hoelzer, DVM, PhD, senior director of policy and regulatory affairs at the National Organization for Rare Disorders (NORD). Dr. Hoelzer discusses the importance of convincing the US Congress to renew the Rare Pediatric Disease Priority Review Voucher Program, which is set to expire on September 30, 2024.

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14:45

An Interview With Michelle C. Werner, CEO of Alltrna

Rare Care Podcast ·

2024/07/25

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Michelle C. Werner, CEO of Alltrna, on nonsense mutations in Duchenne muscular dystrophy. She's also the mother of a boy with the disease.

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08:32

An Interview With Durresamin Khan, Pakistani Mother...

Rare Care Podcast ·

2024/07/01

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Durresamin Khan, the Pakistani mother of a boy with Duchenne muscular dystrophy, about the difficulties of obtaining treatment for DMD patients who are ineligible for gene therapy.

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An Interview With Jenny Huang, Mother of SMA Patient...

Rare Care Podcast ·

2024/06/27

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jenny Huang, whose son, Benjamin Lou, is an award-winning math major at MIT who also has spinal muscular atrophy.

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14:24

An Interview With Pamela Gavin, New CEO of the...

Rare Care Podcast ·

2024/06/10

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Pamela Gavin, the newly appointed CEO of the National Organization for Rare Disorders (NORD).

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18:00

An Interview With Patricia Weltin, Founder and CEO of...

Rare Care Podcast ·

2024/06/03

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Patricia Weltin,founder and CEO of Beyond the Diagnosis—a nonprofit that uses art to raise public awareness of children with ultra-rare diseases.

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44 results

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