Broadway Belts for Pulmonary Fibrosis is a yearly musical and comedy fundraiser to fight pulmonary fibrosis (PF). Created 7 years ago to honor the memory of Associated Press theater critic…
The first medication to combat spinal muscular atrophy (SMA) has recently been approved by the United States Food and Drug Administration. It is approved for use by children as well…
With all the political hocus-pocus that's enveloped the United States over the past year, I'm starting to get "petition burn-out," "marcher's burn-out," and just a general "call-to-action burn-out." This is…
Attention! A Sjögren’s Support Group will be meeting in Ohio. This meeting will take place February 12th from 12:00 pm-2:00 pm at Flower Hospital in the Conference Center Building, 5200 Harroun Road,…
Genetic testing for Spinal Muscular Atrophy (SMA). Most US-born newborns are undergo testing to find out if they have certain genetic conditions. These tests vary from state to state. There…
The first MDS patient forum of 2017 is fast approaching! The forum is sponsored by the MDS Foundation is completely free for you! Just don't forget to register. The event…
When most people hear about scientists messing around with genetic manipulation, they think of the antagonist of a comic book trying to make super soldiers. But, that’s not what geneticists…
It’s always heartening to see scientists take up research in therapeutic areas that are under served and poorly understood. And when their research yields positive results, it’s downright amazing. Honestly,…
Science has a Little Engine That Could story that you may want to check out. It makes for a pretty dense read, but once you wade through the data, the…
This past December, the United States Congress was temporarily struck by a moment of bipartisanship when it passed the 21st Century Cures Bill. The bill, which President Obama signed into…
For those who watch the efforts to combat chronic diseases from the sidelines, it’s easy to see the war as one where humans are the underdogs facing a huge, formidable…
A 10-year-old boy in Colorado will be ringing in the new year with a new kidney, and his parents couldn't be more relieved. Marcus Root suffers from cystinosis, a rare…
Besties are… well… the best! Lauren Smith just earned a Best of the Besties award for friendship by deciding to run in the Marathon de Paris 2017 on April 9,…
Yes, it's that time again, when holiday meals and homemade pies entice us to stay at the table longer than we otherwise might. With the holiday season in full effect,…
January is not a surprising month. It takes people a while to remember to write the correct year, your Facebook feed is full of people going hard at the gym,…
Do you ever you read a headline and do a double take? The “what the hell did I just read” head shake combined with the eye squint—just in case you…
On the phone, Katie Larimore of the Cystinosis Research Network (CRN) sounds like the happiest parts of a country song—she’s friendly, passionate, and prone to affectionate names like “honey.” She…
For anyone living with severe chronic pain from Complex Regional Pain Syndrome (CRPS), the best possible gift they could receive—short of a cure—would be a good treatment. To date, however,…
As the wild, fractious year of 2016 claws it’s way to the finish line, we could really, really, REALLY use some good news. In a year that took away so…
As someone who's supposed to take medicine at the same time every day, I'll admit it's not always easy. It's not hard per se... things just get in the way. If…
While Trey Finomore, a preteen from Colorado, was visiting family in Ohio, his parents noticed he was collecting a lot of bruises. Most of the time, it's expected kids will…
For 26 years, police officer Dave Clement, put his life on the line every day for the people of Seattle. He often worked with the poorest of the poor, helping to…
Are you a person living with trigeminal neuralgia (TN)? Are you aware of the Facial Pain Association (FPA)? Well, you should be. This organization is incredible!! Focused on people with TN, this…
Baby Isabella (pictured above) is in serious need of a hospital transfer. Her condition Gastroschisis, is rare. She needs a facility with people who have the most experience caring for…
If you have Ehlers-Danlos Syndrome (EDS), life can get a bit complicated. Between doctors not knowing what you have to trying to figure out what treatments to use, it can…
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