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In Rare Form

A total of 54 posts are filed under In Rare Form
Teens Want a Say about Their Genetic Information
When my wife became pregnant with our first child, the technician performing the ultrasound asked if we wanted to know the sex of the child.… Continue Reading
Registry Hopes to Shed Light on Rare Disorders of Genetic Obesity
For anyone living in the land of the Big Gulp, stuffed crust pizza, and the Cinnabon Caramel Pecanbon, it may be hard to imagine that… Continue Reading
Fighting a Cold War
In 2009, the U.S. Navy deployed Jodie Christopher to Djibouti, Africa as an electronic technician to program radios and work on radar… Continue Reading
Fighting Emergency Medical Protocols that Endanger Rare Disease Patients
Darlene Shelton was proud of the clever bit of safety gear her family had installed in their vehicle for her grandson Danny, who has the… Continue Reading
Learning to Listen to the Patient-Consumer
Shay Brill remembers shopping at malls during store hours, standing in long lines before Christmas, and the frustration of finding a… Continue Reading
Giving New Meaning to “Translational Research”
For rare disease advocates, getting access to the latest medical research can be daunting. The high price tag makes paying for access to… Continue Reading
The What and the How
I tend to multi-task, thanks to a little help with some modest technology. During any given day I will have a long to-do list on my computer… Continue Reading
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