In The Atlantic, science writer extraordinaire Carl Zimmer wrote a fascinating long article about fibrodysplasia ossificans progressiva (FOP), a rare medical disorder in which the sufferer grows a second skeleton. (Above, the skeleton of FOP-sufferer Harry Raymond Eastlack, on display at the Mütter Museum.)
Beyond a tale of medical curiosity, it's a genetic detective story that says a lot about the study of rare diseases. From The Atlantic:
A rare disease is defined as any condition affecting fewer than 200,000 patients in the United States. More than 7,000 such diseases exist, afflicting a total of 25 million to 30 million Americans.
The symptoms of these diseases may differ, but the people who suffer from them share many experiences. Rare diseases frequently go undiagnosed, or misdiagnosed, for years. Once people do find out that they suffer from a rare disease, many discover that medicine cannot help them. Not only is there no drug to prescribe, but in many cases, scientists have little idea of the underlying cause of the disease. And until recently, people with rare diseases had little reason to hope this would change. The medical-research establishment treated them as a lost cause, funneling resources to more-common ailments like cancer and heart disease.
"The Girl Who Turned to Bone
Writing in Slate, Cathy “Weapons of Math Destruction” O’Neill, a skeptical data-scientist, describes the ways that Big Data intersects with ethical considerations.
Our pals at surreal clothiers Imaginary Foundation bring us this fine enamel pin emblazoned with an essential insight of the ages, captured by a simple Venn diagram. Just $10!
In his weekly address, President Barack Obama this week pledged $4 billion in federal funding for computer science education in schools throughout the nation.
Remember back to the time when people thought java was just a hip way to talk about coffee? Or you vaguely remembered from geography class that it’s an island in the South Pacific? We’ve come a long way since then and now that we’ve rocket blasted into the tech future, you’re going to need to […]
Plastic is so 2013. You don’t want to buy something only to throw it away or lose it and barely care. You like nice things and want to hang onto them. The Plazmatic lighter here is a high quality, high tech alternative to the typical cheap, plastic lighter you get at the old gas station. […]
Real engineers build things. Super cool engineers build things with their hands and fingers, like our engineering forefathers did. No idea where to even begin to do that? This step by step Arduino course is now 92% off and is going to get you up and running, from zero to hero, in no time. So […]