We have all heard the phrase knowledge is power. Everyone, at some point in their lives, has to learn how to do something. From cooking, to driving, to using the…
desarrollos recientes de Twitter en la comunidad crónica han implicado el posible descubrimiento de una nueva mascota. Karl Austin (@ Porkchop275) se encontró con una imagen de un tiburón, y…
Familial cold autoinflammatory syndrome (FCAS) is an extremely rare disorder. It's characterized by episodes of joint pain, fever, and other symptoms of inflammation. All of these symptoms are triggered by…
Dr. Paul Raffer was a neurologist who practiced medicine until he got sick with mycosis fungoides. His symptoms began on his skin, and after consulting with a colleague, he was immediately…
What if you had an inherited disorder that caused a fat called globotriaosylceramide to build up in your cells? Chances are pretty good that you'd be diagnosed with Fabry disease,…
Epidermolysis Bullosa, or EB, is a connective tissue disorder that approximately 200 babies are born with each year. The most serious symptom is the extreme fragility of skin. People with EB suffer…
Let's all breathe a sigh of relief that we live in the age of modern medicine—and by that, I mean 2016. Less than 100 years ago, diseases like leprosy, now…
Fabry disease results from deficient activity of alpha-galactosidase A (a-GAL A). Bless you. What? That's an enzyme which breaks down complex sugar-lipid molecules called glycolipids. When the body can't break…
Calling all kind and generous people living near Ilminster in the UK! On August 28, Zellweger UK and the Epilepsy Society raised money AND watched a lovely lady get her…
When I see a rubber boat and a headline with “boy” in it, I freeze. Can I bear to see another heartbreaking story on refugees in need of help? Thankfully, this was…
This November, citizens of Montana will have something very important to vote on—besides who will be the leader of our country, of course. So, what exactly are they voting on?…
A support system, a family member, a significant other, a friend, can mean so much and knowing that there others out there who are going through the same thing, however…
Bronchopulmonary dysplasia (BPD) is a condition that mainly affects premature infants who have very low birth-weight (under 2.2 pounds). Because the baby's lung tissue is underdeveloped, respiratory distress can result,…
Do you live in the United States? Are you an adult? (Meaning, are you older than 18? Whether or not you have your life together does not apply to this…
Idiopathic thrombocytopenic purpura (ITP) is a rare immune disorder that can cause bleeding (from an insufficient platelet count) or bruising because the body is destroying the patient's blood platelets. Normally,…
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…
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…
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…
This goes for peers and physicians alike, chances are if you are uncertain about some aspect of an illness the patients themselves can fill you in. Patients do so much…
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…
The above photo is of Kristina by Sandro Georgi Photography. Check out Kristina's story of living with narcolepsy by clicking here. If you visit Patient Worthy or our Facebook page then…
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…
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