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Insights

A total of 809 posts are filed under Insights
My Life with Ehlers-Danlos: How Can You Be a Champion?
Welcome to 2017, friends! I’m grateful for new beginnings- even if it only means I have to remember to write a new number when I write the… Continue Reading
RARECast: Embracing Collaborations to Drive Development of Rare Disease Therapies
Collaborations have become a critical aspect of the search for new treatments for rare diseases as drug companies, universities, research… Continue Reading
What’s Happening to Cohen? An Undiagnosed Disease Baffles Doctors
“Take him home and try to give him as normal of a life as possible.” What is normal? For one extremely amazing four-year old little boy… Continue Reading
Dupuytren Disease: The Crippling Hand Condition You’ve Never Heard Of
By Dr. Charles Eaton Dupuytren disease is an inherited condition which can affect the hands. It causes scar tissue to form inside the palm,… Continue Reading
Jackson Lab Helping 11-Year-Old With Rare Disease In Search For Cure
With no treatment available yet for an 11-year-old Massachusetts girl with a rare disease, her parents have enlisted Jackson Laboratory to… Continue Reading
Boy Battling Spinal Muscular Atrophy Takes First Steps
BY MARNI HUGHES (source)   From the moment Isaiah Kobernik was born, the odds were stacked against him.   Isaiah was born with a rare… Continue Reading
Life with Collapsible Lungs: It’s Been A Dicey Two Decades
by Dann Furia – 12/12/16 Read more about Dann here. At age 15, shortly following an afternoon swim team practice, I felt a remarkably… Continue Reading
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