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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

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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15:15

An Interview With Lyza Weisman on Living With Spinal...

Rare Care Podcast ·

2025/06/18

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lyza Weisman, who has spinal muscular atrophy type 2, about how she copes with progressive loss of muscle function.

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10:31

An Interview With Allucent's Marcus Delatte, PhD, on...

Rare Care Podcast ·

2025/06/13

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Marcus Delatte, PhD, on how the versatile cannabis plant offers innovative treatments for children with Dravet syndrome and Lennox-Gestaut syndrome.

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11:14

An Interview With Lucy Culp, VP of State Government...

Rare Care Podcast ·

2025/06/09

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lucy Culp, vice-president of state government affairs at the Leukemia & Lymphoma Society, on top issues of importance to patients with rare blood cancers.

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10:47

An Interview With Amyloidosis Patient Dan Lier, a...

Rare Care Podcast ·

2025/05/26

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews amyloidosis patient and former basketball player Dan Lier, a partner with the nonprofit group Somebody To Talk To, about his new "Rare Disease Playbook."

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12:26

An Interview With Huntington Disease Patient and...

Rare Care Podcast ·

2025/05/19

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lauren Holder, an activist and patient with Huntington disease, as well as producer and host of the podcast series Help 4 HD Live.

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13:20

An Interview With MDA Patient Advocate Donavon...

Rare Care Podcast ·

2025/04/28

Larry Luxner, senior correspondent for Rare Disease Advisor, talks to Donavon Decker, who has limb-girdle muscular dystrophy. Decker is the winner of the 2025 MDA Legacy Award for Community Impact in Research.

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14:52

An Interview With MDA 2025 Patient Ambassador Lily...

Rare Care Podcast ·

2025/04/15

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews 17-year-old Lily Sander with Charcot-Marie-Tooth disease. The Muscular Dystrophy Association has named Sander its 2025 MDA Patient Ambassador.

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11:26

An Interview With Duchenne Expert Katherine Mathews,...

Rare Care Podcast ·

2025/04/11

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Katherine Mathews, MD, winner of the Muscular Dystrophy Association's 2025 Legacy Award for Achievement in Clinical Research for her contributions to understanding and treating genetic disorders affecting the neuromuscular system.

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09:10

An Interview With Generalized Pustular Psoriasis...

Rare Care Podcast ·

2025/04/07

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Arash Mostaghimi, MD, an associate professor of dermatology and a practicing physician at Boston's Brigham and Women's Hospital. Dr. Mostaghimi is a recognized expert on generalized pustular psoriasis (GPP).

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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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43 results

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