Aug 31, 2022
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jennifer Wallace Valdes, PT, founder of the Duchenne Therapy Network and physical therapist with CureDuchenne, on the importance of physical therapy and exercise in boys and young men with Duchenne muscular dystrophy.
Aug 25, 2022
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Janet Lynch Lambert, CEO of the Alliance for Regenerative Medicine (ARM). This Washington, DC-based nonprofit aims to bring safe and effective cell and gene therapies to patients around the world.
Aug 21, 2022
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, DC-based nonprofit focuses on eliminating the diagnostic odyssey for rare disease, promoting regulations that speed up...
Aug 15, 2022
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 other treatments for Duchenne muscular dystrophy.
Aug 4, 2022
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 outspoken advocate for LCFAOD, in the absence of any formal patient advocacy organization for those with the...