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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

08:52

An Interview With Dutch Neurologist Ewout Groen of...

Rare Care Podcast ·

2026/04/20

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Dutch neurologist Ewout Groen, PhD, a member of the Scientific Advisory Board of SMA Europe.

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14:12

An Interview With Dr. Jaime Moore on Obesity...

Rare Care Podcast ·

2026/04/13

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jaime Moore, MD, about weight loss drugs—specifically the role of GLP-1 receptor agonists in treating children with neuromuscular diseases and obesity.

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14:27

An Interview With Donna Shipp on Her IgG4-RD Patient...

Rare Care Podcast ·

2026/03/31

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Donna Shipp, a Boston-area nurse who was misdiagnosed with cancer, underwent surgery and later realized she had IgG4-RD. She now advocates on behalf of others with this rare disease.

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12:27

An Interview With Abby Bronson of Edgewise...

Rare Care Podcast ·

2026/03/30

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Abby Bronson, vice president of patient advocacy at Edgewise Therapeutics, about a new effort to raise awareness of Becker muscular dystrophy as a disease distinct from Duchenne muscular dystrophy.

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13:02

An Interview With Dr. Hyun Kim, Director of the...

Rare Care Podcast ·

2026/03/02

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Hyun Kim, MD, professor of medicine and director of the University of Minnesota's Interstitial Lung Disease Program, about idiopathic pulmonary fibrosis.

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13:22

An Interview With Andrea Wilson Woods, Founder of...

Rare Care Podcast ·

2026/02/24

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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10:58

An Interview With Dr. Michael Schilsky of the Yale...

Rare Care Podcast ·

2026/02/17

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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12:21

An Interview With Dr. Aleksander Krag on Diagnosing...

Rare Care Podcast ·

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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07:34

An Interview With Wesley Michael, Founder of Rare...

Rare Care Podcast ·

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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12:27

An Interview With Dr. Barry Byrne, Director of the UF...

Rare Care Podcast ·

2025/11/24

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Barry Byrne, MD, PhD, an expert on Pompe disease and director of the University of Florida's Powell Gene Therapy Center.

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16:34

An Interview With Rheumatologist Eric Matteson,...

Rare Care Podcast ·

2025/11/19

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Eric Matteson, MD, of the Mayo Clinic and winner of the American College of Rheumatology's 2025 Presidential Gold Medal.

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15:50

An Interview With New Mexico Patient Ambassador Karen...

Rare Care Podcast ·

2025/11/11

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Karen Smoot, a resident of New Mexico who has both idiopathic pulmonary fibrosis and pulmonary arterial hypertension. Karen is a patient ambassador for the Pulmonary Fibrosis Foundation.

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08:23

An Interview With Gabriela Romanow, Founder of Rare...

Rare Care Podcast ·

2025/11/04

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Gabriela Romanow, founder of Boston, Massachusetts-based Rare Vision. The charity showcases works by artists with rare neuroimmune diseases such as NMOSD, MOGAD and transverse myelitis.

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07:35

An Interview With Lisa Shea, Director of Global...

Rare Care Podcast ·

2025/10/29

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lisa Shea, director of global patient advocacy and engagement for immunology at Johnson & Johnson, about the experiences of patients affected by HDFN and FNAIT.

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11:12

An Interview With Dr. May Lee Tjoa, Maternal and...

Rare Care Podcast ·

2025/10/15

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews May Lee Tjoa, PhD, senior global medical affairs leader for Johnson & Johnson’s nipocalimab and maternal-fetal immunology division.

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17:04

An Interview With Dr. John Mascarenhas, Professor at...

Rare Care Podcast ·

2025/10/10

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John Mascarenhas, MD, a professor with the Icahn School of Medicine at Mount Sinai in New York, on advancing care in myelofibrosis.

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13:20

An Interview With Dr. Carolina Barnett-Tapia,...

Rare Care Podcast ·

2025/07/14

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Carolina Barnett-Tapia, MD PhD, an associate professor of neurology at the University of Toronto, about how myasthenia gravis is treated throughout the Western Hemisphere.

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13:14

An Interview With Dr. Daniel Grant, VP and Global...

Rare Care Podcast ·

2025/07/02

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Daniel Grant, MD, vice president and global program head of neuroscience and gene therapy at Swiss pharma giant Novartis, on emerging therapies for SMA.

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An Interview With Ashley Stanley-Copeland, MD, of...

Rare Care Podcast ·

2025/06/26

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ashley Stanley-Copeland, MD, of Dell Children's Medical Center in Austin, Texas, on therapeutic options available to patients with Duchenne muscular dystrophy (DMD).

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11:55

An Interview With Dr. Sithara Ramdas on Neonatal and...

Rare Care Podcast ·

2025/06/20

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pediatric neurologist Sithara Ramdas, MD, of Oxford Children's Hospital in England, on neonatal and juvenile myasthenia gravis.

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53 results

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