Industry Experts

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...

Bret Koncak

May 14, 20244 min read

Is 'Patient-Centered' enough for medically complex patients & families participating in clinical trials or new treatments?

When we ask patients or caregivers to do more, do they see a substantial return on their time investment?

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

Real stories from real caregivers and experts.