Season 5 has been fantastic.  We feel so thankful to our guests for sharing their stories. 

Which emotion-character from “Inside Out” are you?  Sanath and Brittany reveal the characters they relate to the most.  Rare parents experience the full range of emotions, sometimes in the period of a single day, and it can get very tiring.    

In the season finale, we talk about the need to step away and retreat into the cave to discover the next leg of the journey.  

We are taking a bit of break too.  We plan to be back in early 2025. 

As a new parent, you feel like “Oh, my gosh, I must be going crazy” or…

…maybe the doctors don’t even understand what is going on.

In some instances, those doctors begin to question the parents and their motives.  There is even a diagnosis for this, Munchausen By Proxy (MBP).   The problem is that the signs of MBP and just being a good parent of a rare child look very much the same.

Donna Sullivan discusses her traumatic experience of being suspected of imagining her two kids’ illnesses.  Her relentless advocacy was costing her credibility.

We often hear the stories of patients and caregivers.

Rare Patient Voice is well known for connecting family's stories with the researchers who need to hear them. The founder, Wes Michael, sat down with us to share the results of a caregiver survey they conducted in late 2023.

These data can now be used to make the case for new policy, for the need to provide for these families, and even to explain to outsiders what they are going through.

It was a chance of a lifetime, but it was scary for 10-year-old. Billy tells us about his memories and perspective being in a clinical trial for Duchenne Muscular Dystrophy. 

They were on the front lines of research that has now brought hope to some boys with Duchenne Muscular Dystrophy. Exon skipping clinical trial.

Parents cannot focus 100% on the child as well as make progress toward a treatment. It’s just not humanly possible.