by Peter Ciszewski | Oct 22, 2021
Kelly Heger, Founder of the AADC Family Network and mother and caregiver of Jillian Heger, who lives with aromatic L-amino acid decarboxylase (AADC) deficiency, describes Jillian’s diagnostic journey. Aromatic L-amino acid decarboxylase (AADC) deficiency is a rare...
by Peter Ciszewski | Oct 22, 2021
Samantha Masterson, CEO and President of Myasthenia Gravis Foundation of America (MGFA), describes the long diagnostic journey many myasthenia gravis patients face. Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by weakness of...
by Peter Ciszewski | Oct 21, 2021
Sydney Stern, Director of Giant Cell Tumor Programs at the Life Raft Group, Ph.D. Candidate at the University of Maryland Baltimore, and tenosynovial giant cell tumor (TGCT) patient, gives an overview of TGCT. As Ms. Stern explains, TGCT are a group of rare,...
by Peter Ciszewski | Oct 20, 2021
Salvatore Dileo, RPh, Director of Pharmacy, Westmed Medical Group in New York, discusses some of the issues regarding insurance coverage and compounding drugs. Although some insurance companies will reimburse patients for compounded medications, many do not....
by Peter Ciszewski | Oct 20, 2021
James Cassidy, MD, PhD, Chief Medical Officer at SpringWorks Therapeutics, discusses the phase 3 DeFi trial and phase 2 pediatric study of nirogacestat as a treatment for Desmoid tumors. Desmoid tumors can grow anywhere on the body into surrounding healthy...
