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A total of 788 posts are filed under Insights
Toddler with Microvillus Inclusion Needs FIVE Organ Transplants to Survive
A 2-year-old with a rare disease is on the transplant list for not one, but five organs. Jakob Perez has microvillus inclusion, an… Continue Reading
New Jersey Nursery Donates Christmas Tree Sales to Boys Battling Rare Disease
The holiday season has arrived, when revelers hit the stores or sidewalks searching for that perfect Christmas tree. But for one couple from… Continue Reading
How Rare is Finding a Romantic Relationship for Rare Patients?
Name: Christian Jacobs Relationship status: Single Gender: Male Age: 25 About me: I have a rare disease called Homozygous Familial… Continue Reading
RARECast: Why Genomics May Be in Google’s DNA
The Internet giant Google has set its sights on revolutionizing how researchers store, analyze, and share genomic data. The company recently… Continue Reading
Human Brain Anatomy
What Happens When Great Scientists Get Diagnosed With Rare Diseases?
by Doug Wylie In December 2015 after spending two months at St George’s Neurology Department and undergoing numerous blood tests, MRIs,… Continue Reading
A Family Secret: The Disease Our Doctors Have Yet to Understand
By Kathy Croskey-Humbers I watched my dad waste away when I was in my early teens. He was diagnosed at that time with ALS. Unable to care… Continue Reading
Halo’s Story: Febrile Infection Related Epilepsy Syndrome
by Felicia Caples My daughter, Halo, was always such a interesting little girl. I was told I could never have children, but yet she still… Continue Reading