Rare Parenting
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...
top of page
Tricia Moore
- Jul 8
- 3 min
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
Rare Parenting
- Jun 25
- 3 min
Tethered Spinal Cord Syndrome and Surgery: What Parents Need to Know
A tethered spinal cord (or tethered spinal cord syndrome) is a developmental abnormality that occurs in about 2 of every 1,000 births...
Rare Parenting
- Apr 28
- 3 min
What Parents Need to Know About SUDEP – Sudden Unexpected Death in Epilepsy
Epilepsy affects up to 470,000 American children and about 11 million children ages 15 and under worldwide.
Rare Parenting
- Mar 19
- 4 min
What is a Child Life Specialist in the Hospital?
Parents of children with medical conditions or complex needs are usually familiar with an array of hospital staff, including doctors...
Rare Parenting
- Jan 19
- 5 min
Undiagnosed Children: What to Do Next
Parents of children with rare diseases may spend years tracking down effective treatments as they manage symptoms...
_edited.png)
a few of our favorites.
Industry podcasts worth checking out!
Brady Crandall
- Sep 5
- 3 min
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.
featured blog
blog
Real stories from real caregivers and experts.
.png)
bottom of page