Meet Jordan Kalick and his mom Stacy Kalick!
Meet Alex Salser and learn about her journey with LCHAD!
ENERGY IN ACTION - EPISODE 094 Barth Syndrome - When the Lack of Fair, Equitable and Appropriate Regulatory Review Process Jeopardizes Ultra-Rare Drug Development ...
TRAILER - PARENTS AS RARE I am Adam Johnson, a dad and rare disease patient advocate, a self-proclaimed Dadvocate. From the onset of symptoms...