Happy Friday! We have some great news for the short bowel syndrome community. We also have info on a PBS doc you won't want to miss. One of our contributors…
Let's take a trip to West Yorkshire, England, where a rare disease story is unfolding in the intense world of rugby. Rob Burrow is a retired English professor turned rugby…
Indianapolis is known for its speedway, but this weekend, scientists, physicians and advocates for advancements in cystic fibrosis (CF) therapies are gathering there for the 31st Annual North American Cystic…
Exciting updates have come out of Alnylam Pharmaceuticals. They just released data from one of their highly anticipated trials for its leading rare disease drug. It looks like it did…
Up until now, diagnosing ovarian cancer hasn't been so easy. Most of the time, it goes undiagnosed until it's already advanced. At that point, treatment is harder and less reliable.…
Dogs, with their pure hearts and boundless supply of affection, have made life better for humans for a long time. Dogs aren't just making people feel better by giving them…
Familial partial lipodystrophy (FPL) is a rare genetic disorder that causes fat cells to die off. This makes people with this disorder suffer from the progressive loss of body fat. At…
Getting a cold or flu is bad enough for most "healthy" people, but if you have a progressive, incurable lung disease, such as idiopathic pulmonary fibrosis (IPF), cystic fibrosis, COPD,…
I always schedule my mammograms during October, as it’s Breast Cancer Awareness Month. It’s much easier to remember to get one when every network news anchor is passionately reminding me…
A Futurism article this week put into very human terms the ongoing question we face when it comes to rare disease treatment and Pharma: What is the cost of life?…
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