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Brady Crandall
Sep 5, 20243 min read
From Isolated Dad to Connected Founder: How Community Shaped My Journey with HIE and Youth Crews
When our daughter was born with HIE (Hypoxic-Ischemic Encephalopathy), it felt like our worldhad shrunk to the size of a hospital room.

Courageous Parents Network
Sep 3, 20242 min read
In the Room: Let’s Make Caregiving a Bit Easier
This IN THE ROOM event featured 2 Rare Parents who Founded platforms.


Ryan Sheedy
Jul 10, 20243 min read
Our Unexpected Hospital Visit While On Vacation
As a parent of a child with a rare and complex medical condition, every outing can feel like a high-stakes operation...

Rare Parenting
Jul 9, 20244 min read
Does Your Child Need Genetic Testing?
While you might think your child is only at risk of a genetic disease if a certain condition runs in the family...

Tricia Moore
Jul 8, 20243 min read
Shining the Sun on Caregivers
“Reynolds would never have been ready for his upcoming kindergarten year without his time at Sunshine School,” said Reynolds’ father, Ryan

mejo
Jul 1, 20244 min read
The Rare Disease Rollercoaster: ER prepared while on an intensive trip.
Riding the Rare Disease rollercoaster comes with many unexpected twists and turns, sometimes we find ourselves in situations we never imagin
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mejo
7 days ago4 min read
Finding His Voice: Jonathan’s Journey with an Ultra-Rare Disease and How He Advocates for All
When you’re living with a condition that fewer than 20 people in the world share, it can feel isolating—like carrying a secret...


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