On the show today, Matthew Zachary welcomes Jo-Ann D’Angelo, a Parry-Romberg syndrome patient and the Founder of The Parry-Romberg Syndrome Foundation. PRS, as it is known in acronym land, is an extremely rare facial disfigurement that impacts the bone, muscle, and dental only on one side of the face. There… Read More
On the show today: Jeff Goldstein, President, and Founder of the Lung Transplant Foundation, a nonprofit organization that provides education and emotional support for transplant recipients and their caregivers and raises money for lung transplant research. Jeff was diagnosed in his mid-40s… Read More
On the show today, we are talking all things adolescent and young adult (AYA) rare disease. Back when I was CEO at Stupid Cancer, we’d always say that AYA cancer was not better or worse, just different. And the same holds true for this community. Joining… Read More
On the show today: Vanessa Boulanger is Director of Research at NORD and heads up — you guessed it — NORD’s research department. What kind of research, you ask? Well, I’m glad you asked. We’ll be discussing NORD’s Read More
Dr. Rachel Bailey joins me today on the program. She is an Assistant Professor of the Center for Alzheimer’s and Neurodegenerative Diseases and Pediatrics at UT Southwestern Medical Center. Today’s episode is all about those two magic words, no not “COVID Vaccine… Read More
