Rare Parenting
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...
top of page
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...
Bret Koncak
May 144 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 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...
_edited.png)
Our favorites
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
Featured blog
Blog
Real stories from real caregivers and experts.
.png)
bottom of page