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In the Room: Let’s Make Caregiving a Bit Easier
This IN THE ROOM event featured 2 Rare Parents who Founded platforms.
Courageous Parents Network
Sep 3, 20242 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...
Ryan Sheedy
Jul 11, 20243 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...
Rare Parenting
Jul 10, 20244 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
Tricia Moore
Jul 8, 20243 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
mejo
Jul 2, 20244 min read
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
Jun 25, 20243 min read
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Our favorites
Industry podcasts worth checking out!
Hope With Lo: A Rare Journey of Courage, Care and Community
Lovingly known as “Lo,” Lola was diagnosed just before her first birthday. That moment changed everything for her family. Blind, deaf (she wears cochlear implants), and unable to walk or talk, Lola also faces serious complications with her liver, kidneys, bones....
mejo
Apr 144 min read
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Real stories from real patients, caregivers and experts.
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