Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Pradeep Mammen, MD, professor of internal medicine and director of the Neuromuscular Cardiomyopathy Clinic at UT Southwestern in Dallas, Texas. Dr. Mammen, a speaker at the CureDuchenne 2022 Futures conference, has done extensive research on the issue of female carriers of muscular dystrophy.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews wheelchair-bound Justin Skeesuck, who didn't let his progressive genetic disease stop him from crossing Spain's 500-mile Camino de Santiago. The adventure, with his best friend Patrick Gray, led to the book and movie "I'll Push You." Justin and Patrick were keynote speakers at the recent CureDuchenne 2022 Futures conference in Orlando, Florida.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Shahid Khan, MD, of Imperial College London, on why an update to ICD-10 coding is urgently needed for correct diagnosis of cholangocarcinoma.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Marissa Penrod, founder of the Indiana-based nonprofit group Team Joseph, which provides financial assistance to families like her own that have been affected by Duchenne muscular dystrophy.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Mary Beth Scholand, MD, director of the Interstitial Lung Disease Program at the University of Utah in Salt Lake City. Dr. Scholand discusses a newly announced initiative, "Bridging Specialties: Timely Diagnosis for ILD Patients," between the American College of Chest Physicians (CHEST) and the Three Lakes Foundation.

Larry Luxner, senior correspondent for Rare Disease Advisor, interiews Josh Disbrow, CEO of Aytu Bio, a Colorado company developing potentially lifesaving products in the areas of pediatric onset and rare disease, particularly severe upper respiratory conditions.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ilan Ganot, founder and CEO of Solid Biosciences in Cambridge, Massachusetts. The Israeli-born Ganot started his company in order to find a cure for his son, Eytani, who has DMD.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jerry Mendell, MD, professor of neurology and pediatrics at Nationwide Children’s Hospital in Columbus, Ohio. Dr. Mendell is among the most prominent experts in Duchenne muscular dystrophy, and a pioneer in gene therapy. He met his first Duchenne patient in 1969.