June is hectic, with all those weddings and graduations. July is loud—firecrackers, political conventions, family reunions—and the humidity is stifling. But August, dear sweet lovely August? It might just be…
The National Health Council (NHC) and the National Organization for Rare Disorders (NORD) submitted a letter to Congressional leaders Friday - undersigned by over 120 patient advocacy organizations - urging…
We’ve all heard the expression, “Beauty is in the eye of the beholder.” How about another cliché? “One man’s trash is another man’s treasure.” These trite statements do, in fact,…
Two years ago, Lucas wouldn't go anywhere near water. Last month, he tackled a swimming challenge, and he did so in support of a cause that's close to home. Lucas…
More than 35,000 Americans suffer from Huntington's disease (HD), a neurodegenerative disease. Eventually, HD destroys a person's ability to walk, talk, swallow, or have meaningful relationships with friends and family. Chorea is…
Just a few days after her wedding, when most people are on their honeymoon, Morgan Alamo was told that she may have cancer. Who would have thought that the wedding…
There are four million people in the United States walking around with Sjogren’s disease, and nine out of 10 of them are women. This autoimmune disease affects the entire body…
Maya Doyle of Quinnipiac University and Allison Werner-Lin of the University of Pennsylvania conducted a scientific research study to understand the experience of adults and emerging adults living with cystinosis. There…
As a registered nurse, I have taken care of a fair share of the senior population. I have heard some great stories and also some funny quotes. Several older individuals…
If you're one of the extra rare people with Primary Biliary Cholangitis and a thyroid disease, this new research might put a smile on your face! But let's make sure we're all on…
Who doesn’t like a good comeback story? Especially when it's about POTS? There are far, far, far too many challenges in life that can make a person come undone. From…
To put it lightly, the phrase “fight like a girl” isn’t exactly music to my ears. But when women take ownership of the saying, re-claim it in a way, that’s…
"I have chronic Lyme Disease and it's chronic because it took so long to get it treated." William and Mary student Alexis Plofchan is the subject of a seven-minute documentary directed by…
A quick search of the Internet will tell you that fatigue is a common symptom of almost every disease, disorder, and syndrome. There are other symptoms that tend to be…
Has anyone ever called you one in a million? You took it as a compliment, no doubt. Maybe you saw this as someone saying that you’re special, you’re unique, you’re…
Happy Friday Patient Worthians! You might notice that the headline has a lot of acronyms in it... ah, welcome to the rare disease world! We DO have answers for what all of that…
The pituitary gland is a pea-sized gland that acts as the body’s “master control” and governs the functioning of almost all of the other endocrine organs in the body. These are…
Life is a balancing act. We need to balance our responsibilities with our desires. We need to balance work lives with personal lives. Our balancing acts aren’t as dire as…
Having a difficult time finding resources on Friedreich's ataxia (FRDA)? Even for the generation that grew up with Google, keeping up with the news online can be tricky. You’ve got…
There are few things more frightening and horrifying for a new parent than being told that their child has a lifelong medical disorder. Perhaps the only words that could make…
Juvenile idiopathic arthritis (JIA) is the most common form of arthritis in children. It occurs when the body's autoimmune system attacks healthy tissue and causes inflammation of the joints. What triggers…
With the rise of medical advancements, you would think that fewer people would end up with short bowel syndrome (SBS). Yet, that is not the case. The reason for developing SBS…
National Center for Advancing Translational Sciences (NCATS) is a division of the NIH, located in Bethesda MD. On Friday June 30th they will have an all day program to discuss…
It's hard enough to find love in this world. Apps, matchmaking websites, and nosy friends can do their best to lend a hand - but at the end of the…
One teenager with Hunter syndrome doesn't let anything hold him back. This doesn't go unnoticed. Hunter syndrome is a rare inherited disorder which prevents production of a key enzyme that…
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