When it comes to rare diseases, the diagnostic process can be long and arduous. On average, patients wait around 7 years for a diagnosis. Oftentimes, this also complicates treatment and…
While genomic research presents the unique opportunity of combating diseases and gene malfunctions at the source, the practice has been incredibly controversial. Some people worry about the ethics of…
Eva Shea wondered about her daughter. Mimi went to preschool like most children, and seemed otherwise healthy. She had, however, a peculiar, chronic cough. It sounded as though Mimi smoked…
According to an article from news-medical.net, researchers are beginning to delve into the causes of a rare lung disease called primary ciliary dyskinesia. This research is revealing previously unknown information…
Chloe Fernandez is an 11-year-old with primary ciliary dyskinesia, and that hasn't stopped her from being an advocate for the disease, reports Los Angeles Times. When given several amazing opportunities…
Happy Day-After-St.Patty's-Day! As you all know, Rare Disease Week was at the very beginning of March and we have some awesome highlights for you below. One about a young artist…
According to PW writer Kathy, there was a shining star at Rare Disease Week on Capitol Hill's Rare Artist Reception. Olivia is the youngest of four daughters. She was diagnosed…
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