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Rare Disease Advisor's Rare Care Podcast features exclusive interviews with experts and stakeholders from the rare disease community.... more
FAQs about Rare Care Podcast:How many episodes does Rare Care Podcast have?The podcast currently has 199 episodes available.
June 09, 202383: An Interview with Kim Smith-Whitley, MDLarry Luxner, senior correspondent for Rare Disease Advisor, interviews Kim Smith-Whitley, MD, a pediatric hematologist and top Pfizer execuive specializing in the treatment of sickle cell disease....more16minPlay
June 06, 202382: An Interview with Jason Tardio, Chief Operating Officer of Ovid TherapeuticsLarry Luxner, senior correspondent for Rare Disease Advisor, interviews Jason Tardio, chief operating officer at Ovid Therapeutics,...more13minPlay
May 30, 202381: An Interview With Jennifer MacDonald, a Woman From Mexico With AATDLarry Luxner, senior correspondent for Rare Disease Advisor, interviews Jennifer MacDonald—who has alpha-1 antitrypsin deficiency— about the difficulties of being a rare disease patient in Mexico....more14minPlay
May 30, 202380: An Interview With Mindy Henderson, Editor-in-Chief of MDA's Quest MagazineLarry Luxner, senior correspondent for Rare Disease Advisor, interviews Mindy Henderson, an SMA patient who is editor-in-chief of Quest, the quarterly magazine of the Muscular Dystrophy Association....more14minPlay
May 19, 202379: An Interview With DMD Patient Advocate Christopher CurranLarry Luxner, senior correspondent for Rare Disease Advisor, interviews Christopher Curran, who along with his wife, Jessica, founded Kindness Over Muscular Dystrophy to advocate for patients like their 12-year-old son, Conner, who has Duchenne muscular dystrophy....more16minPlay
May 17, 202378: An Interview With Leah Zelaya, a Muscular Dystrophy Association 2023 national ambassadorLarry Luxner, senior correspondent for Rare Disease Advisor, interviews Leah Zelaya, a 2023 national ambassador of the Muscular Dystrophy Association. The 15-year-old aspiring actress from Brooklyn, New York, has an ultra-rare form of spinal muscular atrophy (SMA) known as scapulopereneal SMA....more6minPlay
May 11, 202377: An Interview With Luisa Leal, Founder and CEO of The Akari FoundationLarry Luxner, senior correspondent for Rare Disease Advisor, interviews Luisa Leal, founder and CEO of The Akari Foundation, a Texas-based nonprofit that advocates on behalf of Spanish-speaking families affected by Duchenne muscular dystrophy....more14minPlay
May 04, 202376: An Interview With Julie Parsons, MD, Co-Director of the Neuromuscular Clinic at Children's Hospital ColoradoLarry Luxner, senior correspondent for Rare Disease Advisor, interviews pediatric neurologist Julie Parsons, MD, of Children's Hospital Colorado in Denver. An expert on both muscular atrophy (SMA) and Duchenne muscular dystrophy (DMD), Dr. Parsons discusses how the nation's healthcare system must prepare for an avalanche of Duchenne patients if and when Sarepta's gene therapy wins final approval in May 2023....more17minPlay
April 28, 202375: An Interview With Disabled Patient Advocate Christopher Rosa, PhD, President and CEO of the Viscardi GroupLarry Luxner, senior correspondent for Rare Disease Advisor, interviews Christopher Rosa, PhD, president and CEO of the Viscardi Group. Dr. Rosa, who has limb-girdle muscular dystrophy, is a longtime advocate for the disabled community. His chief mission now is pushing legislation that will require U.S. airlines to let disabled passengers remain in their wheelchairs during flight....more12minPlay
April 18, 202374: An Interview With Matt Granato, President and CEO of the Pulmonary Hypertension AssociationLarry Luxner, senior correspondent for Rare Disease Advisor, interviews Matt Granato, president and CEO of the Pulmonary Hypertension Association, on World PH Day 2023—which takes place May 5—and the urgency of creating awareness about PAH, a frequently misdiagnosed and potentially fatal disease....more14minPlay
FAQs about Rare Care Podcast:How many episodes does Rare Care Podcast have?The podcast currently has 199 episodes available.