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...
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Rare Parenting
- Jun 25
- 3 min
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
- 4 min
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 19
- 4 min
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
- 5 min
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!
Brady Crandall
- Sep 5
- 3 min
From Isolated Dad to Connected Founder: How Community Shaped My Journey with HIE and Youth Crews
When our daughter was born with HIE (Hypoxic-Ischemic Encephalopathy), it felt like our worldhad shrunk to the size of a hospital room.
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