Latest Episodes
34
Meet 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,...
33
Parents as Rare - Emma and 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...
32
RNE 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...
31
Making Mito 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...
30
Trailer - Parents As Rare
TRAILER - PARENTS AS RARE I am Adam Johnson, a dad and rare disease patient advocate, a self-proclaimed Dadvocate. From the onset of symptoms...
29
AllStripes and Cyclerion - Community Collaboration to Push Clinical Trials Forward
ENERGY IN ACTION - EPISODE 029 AllStripes & Cyclerion - Community Collaboration to Push Clinical Trials Forward Richard Elles, Director of Patient Advocacy &...