Latest Episodes
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 &...
28
Fight - Research - Hope - Cure
Meet Kasey Woleben and Sophia Zilber from the Cure Mito Foundation! The Cure SURF1 Foundation was founded in 2018 by a group of families...
27
Another Helping
Meet Another Helping founder and daughter of the "Dadvocate," Emma Johnson and learn how she combined 2 of her passions to help others who...