Latest Episodes
41
EveryLife Foundation Newborn Screening
ENERGY IN ACTION - EPISODE 041 EveryLife Foundation Newborn Screening The EveryLife Foundation is dedicated to empowering the rare disease patient community to advocate...
40
Silver Linings with Sarah Kate
ENERGY IN ACTION - EPISODE 040 Silver Linings with Sarah Kate Sarah Kate Frey is a mitochondrial disease patient who is always looking on...
39
Chronically Simple and Simply Unbreakable - Kristy Dickinson
PARENTS AS RARE - EPISODE 039 Chronically Simple & Simply Unbreakable - Kristy Dickinson Kristy Dickinson is a wife and mother of three, navigating...
38
Patient Led Trials
ENERGY IN ACTION - EPISODE 038 Patient Led Trials Steve Smith is a rare disease advocate, father, and a fierce fighter for rare disease...
0
The Patient Teacher Program
ENERGY IN ACTION - EPISODE 037 The Patient Teacher Program Jake Athoe is a graduate of Boston University, where he earned a Bachelor of...
36
Parents As Rare - Parenting with VCP Disease - Nathan Peck
PARENTS AS RARE - EPISODE 036 Parenting with VCP Disease - Nathan Peck Nathan Peck is a husband, dad, VCP patient and the CEO...