Rare Care Podcast

Rare Care Podcast

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

Episodes

July 14, 2025 13 mins

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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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews British scientist Angela Vincent, winner of the first-ever Lifetime Achievement Award from the Myasthenia Gravis Foundation of America.

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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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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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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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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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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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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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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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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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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Antonella Favit-Van Pelt, MD, PhD, chief medical officer at Helius Medical, on the potential of neuromodulation to treat people with multiple sclerosis.

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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Joyce Kullman, executive director of the Vasculitis Foundation, duirng Vasculitis Awareness Month.

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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Chris Lewis, whose father, Jerry Lewis, was not only among the most famous comedians of the 20th century but also a tireless advocate for people with muscular dystrophy.

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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Chris Lewis, whose father, Jerry Lewis, was not only among the most famous comedians of the 20th century but also a tireless advocate for people with muscular dystrophy.

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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lisa Butler, CEO of the GBS-CIDP Foundation, on what her organization is doing for patients with chronic inflammatory demyelinating polyneuropathy (CIDP).

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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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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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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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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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Rare Disease Advisor correspondent Tori Rodriguez interviews clinical hematologist and professor Luke Chen, MD, about IgG4-related disease and how it mimics various malignancies.

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