Trigeminal neuralgia is a chronic disease characterized by a sudden severe pain in the face, which can be unpredictable and last for few seconds up to a minute. These painful…
Children are full of wonderment and awe. Question after question after question (yes, the list is usually long), it can be exhausting answering every inquiry, but somewhere inside each adult,…
Welcome back to Editor's Choice! This week we have an interesting take on Parkinson's treatment. We also have an empowering article from one of PW's rare disease contributors. We are all feeling the…
We can only imagine how terrible it would be to be diagnosed with something that sits in our bodies for days or weeks, festering. For some, we find comfort in…
Fact: Tourette syndrome (TS) is recognized as a neurological condition that affects the brain and nervous system. About 1 out of 100 people are affected by this condition that's frequently…
The Rare Impact Awards for 2017 will be held this year, on May 18th, at 6:30 pm in Washington, DC. The Rare Impact Awards is the National Organization for Rare Disorders (NORDS)…
If dance is the universal language, then what does NC State’s annual Dance Marathon have to say--especially to type 1 tyrosinemia (TYR)? A lot, it turns out. The numbers seem…
After lobbying during Rare Disease Week on Capitol Hill a couple of weeks ago, I was convinced we were pretty successful with our congresspersons in showing them how vital NIH…
I recently covered an author who had some solid advice for drug makers in regards to the rare disease pricing problem. The following drug maker may or may not have…
Ladies and gentlemen, it's that time of year again, when I put on my superhero cape, I ascend to the top of the highest mountain, and at the top of…
Imagine, three to 10 months with your new born baby in a Neonatal Intensive Care Unit (NICU) born with a potentially mortal disease or defect. You’ve battled through surgeries, recoveries,…
The liver is a pretty important organ. Some people think of it as the place where alcohol goes. Your neighbor’s kid in the 6th grade will tell you that it…
It's really important to be able to recognize the signs Parkinson's disease in women. Most people identify Parkinson’s as an “old man’s illness;” yet thousands of women are diagnosed with Parkinson’s…
Canadian, Barb Charboneau, felt something was wrong with her around the age of 11. Years later, she was diagnosed with Tourette syndrome. Then it took many more years for her…
“Breaking The Sickle” is the name of a new children’s book. At first glance, you might think it is about destroying communist regimes, it is in fact a book about…
Friedreich's ataxia (FA) is a rare and painful disease. With few treatments available to treat the genetic mutation, most therapy is aimed at controlling symptoms. Clearly, these short-term band-aids aren't…
Treading water is difficult. Sometimes, that’s how it feels navigating a new diagnosis. It’s like trying to keep your head above water in a vast, foreign ocean, as waves of information…
Chucky Bartolo of Lovin' Malta introduced Jake Vella to the world yesterday. Jake suffers from the rare disease ROHHAD. While he was a regular kid for the first five years of his…
The key to solving ANY problem is knowledge. And so the same goes for raising awareness for those living with any type of illness. The more we know about the…
Sometimes, the race to develop breakthrough treatments for rare and devastating illnesses can feel less like the Indy 500 and more like a game of Curling played by armless sloths.…
We are huge proponents of the 21st Century Cures Act, as it does so much for the rare community. However, there has been an unintended consequence of it's 2016 passing…
In the post-Sputnik era, science was king—or so says Peter Agre as he recalls the golden age of science. But, when is it wise to dismiss the “ivory tower” mentality…
Irrelevant, insignificant, ignored, un-empowered, but worst of all INVISIBLE. Let me let you in on a big secret. Those of us who are fighting everyday with the simplest of tasks,…
Cure Sickle Cell is a nonprofit organization. One of their goals is to raise money for research. Sickle cell is an inherited disease. Moreover, the disease prevents red blood cells…
April 17, 2017 is World Hemophilia Day. This is significant not only for people with hemophilia, but also for those with other bleeding disorders like von Willebrand disease (vWD). If…
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