Alexis Snyder, a parent of a teenager with chronic complex health issues since birth, shares her journey. She speaks about accepting what is, helping her daughter prepare to manage the many transitions in medical care from infancy to adulthood,

Welcome to the Health Hats podcast series about young adults transitioning from pediatric to adult medical care. In this series, I interview young adults with complex medical conditions, their parent or guardians,

Interview with Jill Woodworth, mother of 4, three with Tuberous Sclerosis, managing the transition from pediatric to adult medical care. Fascinating, frustrating, heart-breaking, and inspiring. Silos and boundaries,  crossing the threshold,

If your team, organization, the project doesn't seem worth your time or smells fishy, check governance. Change is tough without understanding who makes decisions and how. Activists, professional people, community folks - anyone who's part of a team kno...

It’s everywhere, it’s everywhere. I can’t help but see almost everything I do in my advocacy through the lens of health equity.  Whether it’s making decisions about our health and medical care, managing pain,

Data sharing improves health. But it's difficult and unusual. Not sharing leads to error, wasted time, Can we could work together to make data sharing routine? - Blog subscribers: If you don't see the podcast player, click the title above.

What can the clowns can teach us as patients and caregivers about relaxing, reading the room, figuring out what you're there to do, and not ending up more stressed than you went in. Maybe even having a bit of fun.

Episode Summary We’re going somewhere with our best health journey. Destination: Personal health goals. If you’re well, stay well. If you’re acutely ill, get over it. If you’re chronically ill or dying, live the best life possible.

Diversity, equality, and equity are not the same. Diversity = the inclusion of differences. Equality = leveling the playing field. Equity = People have the same opportunity to achieve best physical, mental,

Blood, sweat, tears shared by two. Helping one end and another begin. A disaster that ultimately gives back. Hearts clubbed by diamonds in spades. We learned, we cried, we continued. - Episode Summary Denise Brown of caregiving.