In the world of bleeding disorders, Factor VII deficiency could be considered the “runt of the litter.” And in the “dog eat dog world” of chasing research dollars, it’s a…
Pictured: Dr. Jakub Tolar EB can make a lot of daily activities difficult and painful. Check out some tips and tricks compiled from presentations at the 2016 Debra CARE Conference.…
Finding the money to fund research and the development of treatment (and maybe even a cure) for most rare diseases is difficult for a couple reasons. Rare diseases are notoriously hard…
Okay, here's what's terrifying to me—the fact that there are SO many rare diseases out there and science hasn't even begun to skim the surface of knowing how and when…
In a nutshell... Amyloidosis is a rare blood disorder that occurs when a person's bone marrow makes too much of a protein called "amyloid," which then collects in the body's…
Von Willibrand Disease (VWD) is a bleeding disorder, not unlike hemophilia A and hemophilia B. But don't be fooled. It's very different. It's also the most common bleeding disorder on…
If you have a rare disease, you probably have days when you think: "I wish I had someone to talk to or email back-and-forth with... someone who understands exactly how I…
It's easy to identify the times when a medical condition works against us. In the case of acromegaly, people may experience: fatigue, muscle weakness, severe pain, limited mobility, impaired vision,…
It’s always awesome to announce a new clinical trial, especially for something that could offer relief to people suffering from the rarest of the rare conditions. And rare doesn’t begin…
When you’ve been diagnosed with a rare disease, it’s alarmingly common for your diagnoser to have just as many questions as you do… which is not comforting. Luckily, more resources…
Can I just tell you how I tired I am of all the millennial hate out there? People are beyond harsh to the younger generations, and this article on Heritage High…
The only time we actually like the FDA is when they finally approve drugs—especially when they're for rare diseases. Well, in April of 2016, they made a rare group of…
Welcome to this week's Editor's Choice! When you have a rare disease like dystonia, you come across a ton of different reactions from people in regards to your illness. One…
Featured Image is by Gavin Whitner at musicoomph.com. Dude, I’m sorry but this narcolepsy video needs way more than 90-some views. Posted on Grey Alquist’s YouTube channel, two young man made…
When it comes to science and medicine, big things seldom come in big packages (get your minds out of the gutter). Groundbreaking discoveries that change our understanding of a disease…
dedo mutilado? contusión ósea severa? Fractura en la espalda? No, esto no es un catálogo de las lesiones del club de la lucha, éstas son algunas lesiones reales el Miami…
Most people know that high cholesterol is a ticking time bomb, and that it’s important to eat heart healthy foods low in saturated fat and cholesterol. Public health awareness—and the…
Kim Pimley is a mover and shaker, a businesswoman on the go. She’s one of those energetic people you see running up an escalator, to save time, and also, just…
With rare disease, everyone is familiar with the concept that early diagnosis typically means better patient outcomes. Such is the case with acromegaly. According to a recent article in healio,…
Kallman syndrome is a condition in which puberty is delayed or completely absent from the individual. According to the NIH, it effects just one out of every 10,000 to 86,000…
Hipercolesterolemia familiar heterocigótica (o HeFH), nunca has oído hablar de él? Es un bocado. Es también una condición que hace que los niveles de colesterol de alta peligrosidad y, si…
Carcinoid tumors are rare and most often occur in the lungs and intestinal tract. When they secrete chemicals into the blood stream, the follow symptoms may occur: skin flushing, facial…
According to a recent study, patients who were previously treated for acromegaly were at an increased risk for bone fractures after being treated with growth hormones for six years. Scientists at VU…
The Dystrophic Epidermolysis Bullosa Research Association of America (Debra) describes EB as "The Worst Disease You've Never Heard Of". It's a painful disease without a cure and it's rarity makes…
Emma Gaul’s story is a good reminder of how quickly life’s plans can change when your body turns against itself. Less than two years ago she was a vibrant and…
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