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…
"From belonging to an healthiest elite organisation to being hit by a rare disease is a leap which is not easy to accept." What is it about stories? Why do…
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…
When you are diagnosed with a serious chronic illness like glomerulonephritis, you enter into an entirely new world. Suddenly, you’re spending time inside buildings most people never even noticed. Almost…
Sometimes life can throw a mean curveball and try as you might, you just can't dodge it. Ankylosing spondylitis is one of those curveballs. For some people, it can lie…
Imagine being 16 years old, and instead of meeting cute girls, going out with friends, and going to parties that get busted, you have to manage a rare, chronic condition…
Last night as part of my boyfriend’s birthday gift, we attended a St. Paul Saints’ baseball game in downtown St. Paul, Minnesota. Anyone who knows me even a little bit…
And now for something completely different… It gives me great pleasure to present my list of VIII (a.k.a. eight) things you have to wait for…and ONE very big one you…
The dream of starting a family is one of our strongest biological urges, as well as a common thread that runs throughout humanity and history. Sadly, not everyone who wants…
Q: What does an autoimmune disease that primarily affects tear glands and salivary glands have in common with a James Clavell novel? A: Nothing, really—other than the fact that the…
If you are a rare disease sufferer in the midwest, then you should know about the US Pain Foundation's Pain Treatment Expo in August. So why go? You may find…
Cualquier persona diagnosticada con una enfermedad crónica tiene dos opciones. Opción 1: Vive la vida sin hacer nada y esperar a que llegue el final O Opción 2: Aprender lo…
¿Crees que sabes todo lo que hay que saber sobre la espondilitis anquilosante (EA)? Piensa otra vez. Una nueva investigación ha revelado que las personas con AS tienen un mayor…
Do you know how rare diseases are classified as such in the United States? If a disease affects 200,000 people or fewer, it is considered "rare." Acromegaly, cystinosis, and Gaucher…
The FDA: created to protect public health consumers by assuring the safety, efficacy, and security of medications, devices, food, cosmetics, and other products. No, I did come up with that…
La enfermedad crónica puede ser difícil de explicar a su hijo. La rareza y la persistencia de la condición, así como las limitaciones que se les imponen, pueden ser difíciles…
If this makes sense to you, “Hey, look! Some dude on a sponge has wiped out and is going over the falls on a hollow little right!” then you need…
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