PARENTS AS RARE - EPISODE 036 Parenting with VCP Disease - Nathan Peck Nathan Peck is a husband, dad, VCP patient and the CEO...
ENERGY IN ACTION - EPISODE 094 Barth Syndrome - When the Lack of Fair, Equitable and Appropriate Regulatory Review Process Jeopardizes Ultra-Rare Drug Development ...
ENERGY IN ACTION - EPISODE 041 EveryLife Foundation Newborn Screening The EveryLife Foundation is dedicated to empowering the rare disease patient community to advocate...