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Insights

A total of 860 posts are filed under Insights
RARECast: A Quest for Tribe: Searching for Others with the Same Ultra-Rare Mutation
When Milo Lorentzen was born, concerns over his condition sent him to a neonatal intensive care unit where he spent the first ten days of… Continue Reading
Kawasaki Disease
Two Patients in Same Town Diagnosed with Kawasaki Disease
By Ashley Rodrigue Charles “Dooey” De Silva III was an outgoing six-year-old with a love for fun and a knack for karate. In mid-January,… Continue Reading
la-me-syrian-boy-separated
Young Syrian Patient Faces Rare Disease Treatment Without His Parents
by Melissa Etehad for the L.A. Times At a time when many refugees fleeing war yearn for escape to America, Tony Alsabaa dreams of going home… Continue Reading
A Family Travels the World for Diagnosis of Rare Skeletal Dysplasia for Two Sons
By Nenna Janseen In 2008, Adam and I were planning to start a family. At the time, we were plagued by uncertainty and fear. Dozens of… Continue Reading
Kallmann Syndrome
The 24-Year-Old Late Bloomer: Kallmann Syndrome
I had a fairly uneventful childhood. I was a bit hard of hearing, was fitted for a hearing aid but rarely wore it. At senior school I was… Continue Reading
May-Thurner-Syndrome
20-Years-Old With With May Thurner Syndrome
My name is Maria and I’m 20-years-old. I am from the island of Puerto Rico. I will be sharing my story of how I found out I have the May… Continue Reading
leukoencephalopathy
“Creating a Community” Around Ellie with Leukoencephalopathy
by Gillian Mohney Members of one Virginia family hope to bring attention to a rare disease that may cause paralysis or even death for their… Continue Reading