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Resource Type: Podcasts


Parents As Rare: Chronically Simple & Simply Unbreakable

PARENTS AS RARE – EPISODE 039 Chronically Simple & Simply Unbreakable – Kristy Dickinson Kristy Dickinson is a wife and mother of three, navigating life with multiple rare diseases....


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 patients.  EPISODE HIGHLIGHTS How...


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 Arts in Biochemistry and Molecular...


Parents as Rare: Parenting with VCP Disease

PARENTS AS RARE – EPISODE 036 Parenting with VCP Disease – Nathan Peck Nathan Peck is a husband, dad, VCP patient and the CEO of Cure VCP Disease. Through...


The MitoSantas Program

ENERGY IN ACTION – EPISODE 035 The MitoSantas Program We’re in the Christmas spirit at MitoAction. Jeannie Freeman and Stephanie Tomlinson discuss the popular MitoSantas program. Tune in to...


The Mito Girl

ENERGY IN ACTION – EPISODE 034 Meet The Mito Girl Daniela Gallo shares her journey of living with mitochondrial disease while balancing motherhood, working, spreading awareness and caring for...


Parents as Rare – Emma & Spencer: The Heart of Parents as Rare

PARENTS AS RARE – EPISODE 033 Emma & Spencer – The Heart of Parents As Rare As a dad with a rare disease, I often think about the ways...


Rare New England Annual Conference

ENERGY IN ACTION – EPISODE 032 RNE Annual Conference Rare New England is a nonprofit in Massachusetts who serves the rare disease community in New England. Julie Gortze, Founder...


Making Wishes Come True – A Partnership with Give Kids the World Village

ENERGY IN ACTION – EPISODE 031 Making Mito Wishes Come True – A Partnership with Give Kids The World Village MitoAction and Give Kids The World have partnered to...


Trailer – Parents as Rare

            I am Adam Johnson, a dad and rare disease patient advocate, a self-proclaimed Dadvocate. From the onset of symptoms and after the diagnosis...