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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...

Rare Parenting
Jun 24, 20243 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
Jan 19, 20245 min read
Undiagnosed Children: What to Do Next
Parents of children with rare diseases may spend years tracking down effective treatments as they manage symptoms...
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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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