Articles

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...

Tricia Moore

Jul 83 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

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

Apr 273 min read

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 184 min read

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 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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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.