44: An interview with Annie Kennedy, head of policy, advocacy, and patient engagement at the EveryLife Foundation for Rare Diseases
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Annie Kennedy, head of policy, advocacy, and patient engagement at the EveryLife Foundation for Rare Diseases. This Washington, ...
21 Aug 202214min
43: An Interview With CureDuchenne Chief Scientific Officer Dr. Michael Kelly
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Michael Kelly, PhD, chief scientific officer at CureDuchenne, on the latest developments in exon skipping, gene therapy and othe...
15 Aug 202210min
42: An Interview With LCFAOD Patient Advocate Eileen Sullivan Baker
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Eileen Sullivan Baker, an Ohio attorney whose son, John, has long chain fatty acid oxidation disorder. She has become an outspok...
4 Aug 202215min
41: An interview with cattle rancher Paul Heaton of the Calves2Cure DMD initiative
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Paul Heaton, a Montana cattle rancher whose son has Duchenne, on his Calves2Cure DMD fundraising initiative.
27 Jul 20229min
40: An interview with Emil Kakkis, MD, PhD, founder and CEO of Ultragenyx
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Emil Kakkis, MD, PhD, founder and CEO of San Francisco-based Ultragenyx, on the increasingly complex challenges facing developer...
20 Jul 202213min
39: An interview With Muscular Dystrophy Researcher Pradeep Mammen, MD
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...
13 Jul 202213min
38: An interview with Diana Castro, MD, associate professor of pediatrics, neurology and neurotherapeutics at University of Texas Southwestern in Dallas
5 Jul 202211min
37: An interview with motivational speaker Justin Skeesuck
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 ...
30 Jun 202213min
