It's never easy to lose someone you care about to IPF. It can help, though, to not just mourn their loss, but to celebrate their life. When Irv Feldman passed…
How many things do people dismiss in daily life as just a sign of getting older? Too many, in my opinion. But in this article, The New York Times seems…
For anyone living with acromegaly, which substantially increases growth hormone, it shouldn't be a secret that the condition is hard to treat. The gold standard for first-line treatment has been…
If you have a disease known as Pyrin Associated Autoinflammation with Neurtrophilic Dermatosis (PAAND), you're in luck! Your tongue isn't, though, because that's a TWISTER! Fun fact: It's caused by…
When you have a chronic illness like ankylosing spondylitis (AS), you get used to taking a lot of pills. And I mean A LOT. You take pills for the pain.…
What does pulmonary fibrosis, or scarring of the lungs, have to do with blood? Probably more than I'm aware, because when I first saw that a biopharma company specializing in…
Pompe disease is one of those rare disorders that progresses steadily over the course of a person's life. Patients are lacking the enzyme that breaks down glycogen, and the build-up of…
Race and ethnicity is a touchy subject—and rightfully so—but that doesn’t mean it shouldn’t be discussed, especially in terms of healthcare. The fact is, certain genetic diseases pop up in…
Pompe disease an inherited neuromuscular disorder that is caused by certain gene mutations, particularly in the gene that makes acid alpha-glucosidase (GAA). In Pompe's most severe form, it's often fatal because…
A cure may be just around the corner for people who have hemophilia B. And anytime the word "cure" appears in a sentence with a disease state, there's cause for…
Welcome to this week's Editor's Choice! This week we are highlighting this inspirational, beautiful mother who wants to spread her message. She's currently battling multiple sclerosis in a courageous and proactive way,…
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…
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