rare disease

Ryan Sheedy

Jul 103 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 94 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 243 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 195 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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Industry podcasts worth checking out!

Brien Gearin

Nov 43 min read

Smiles for Ceci

While Rett has changed her life and our life as a family, it hasn’t changed the wonderful little girl Ceci is and always would be with or wi

Real stories from real caregivers and experts.