#71 When the Diagnosis Comes Late: Navigating Adult Wolfram Syndrome
From misdiagnosis to empowerment, Rachel Hyman and Cathy Gildenhorn share their real stories of being diagnosed with a rare disease, Wolfram Syndrome, in adulthood.
#70 The First Spinraza Patients: A Rare Mama’s Advocacy for her Son with SMA
Nikki McIntosh, a rare disease advocate, shares how her family has navigated her son’s diagnosis of Spinal Muscular Atrophy (SMA).
#69 Breath by Breath: Kenny Kasnett’s Journey Through Lung Disease and Transplant
Kenny Kasnett, a seasoned executive and entrepreneur whose life took an unexpected turn with a diagnosis of interstitial lung disease (ILD) leading to a choice, should he get a lung transplant?
#68 The Hidden Danger in Newborns: OTC Deficiency Explained by a Geneticist and a Mother
Pruitt was born with ornithine transcarbamylase (OTC) deficiency, hear from his mother Jordan Kruse and geneticist Dr. Susan Berry about the condition and how healthcare can do better.
#67 Exploring Clinical Trials in Latin America with Julio G. Martinez-Clark
Discover how Latin America offers new opportunities for clinical trials and how Julio G. Martinez-Clark is leading the way in advancing medical device innovation in emerging markets.