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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...
Tricia Moore
Jul 8, 20243 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 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
Apr 27, 20243 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 18, 20244 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 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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Brien Gearin
Nov 4, 20243 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
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