Raise your hand if a doctor’s accused you of pill-seeking? Blamed your symptoms on your weight or claimed you were too young, too black, too old, too Latino to be…
Leanna Mullen knows what it's like to look absolutely normal while in reality being very sick. She has Gaucher disease, a rare inherited condition where the body can't break down…
Are you an adult with isolated cervical dystonia? Wake Forest (Winston Salem, NC) is running a clinical trial of a new botulinum toxin. For more information click here. Or contact:…
Mi nombre es Bonnie y he estado luchando por mi vida durante dieciocho años, pero he estado luchando una batalla invisible durante los últimos doce. Esta es la historia #myinvisiblefight…
Super Bowl 50 is this Sunday! In case you live in a box, the Super Bowl is kind of a big deal. And why shouldn't it be? You take the…
When 63-year-old Donald Castner of Napa Valley, California was diagnosed with idiopathic pulmonary fibrosis, or IPF, it came as a complete surprise. After all, he'd been active and in good health…
To read part 1 of Lisa's post, click here. These are some of my favorite online support for just about anything you need: Have a basic question? These forums are…
You know how that saying goes: “All that glitters is not gold.” Or maybe, “too much of a good thing can make you sick.” Both apply to the metal copper.…
Hey guys... I have a confession to make: I hate dancing. HATE. IT. I hate it because I'm bad at it, and I don't like doing things I'm bad at, especially…
Mi nombre es Bonnie y he estado luchando por mi vida durante dieciocho años, pero he estado luchando una batalla invisible durante los últimos doce. Esta es #myinvisiblefight. En 2002, colgué…
You made it! It's the end of the week and time for yet another Editor's Choice post. What do heart failure and narcolepsy have in common? Do you have a…
If you have a diagnosis of Myasthenia Gravis like me, here are a few things you probably already know: 1. They call us Snowflakes because none of our symptoms are…
I’m sure you’ve heard that old saying; a picture is worth a thousand words? It’s kind of a cliché. It’s also kind of wrong. Some pictures are worth far, far,…
We’ve told you before how pharmaceutical companies can be a good source for free disease education online. Because of the way pharma companies have to vet all their materials to…
Mi nombre es Lisa. Soy sobreviviente luchadora del cáncer 3 veces, y estoy viviendo con la enfermedad autoinmune rara Miastenia Gravis. Soy una madre, una esposa y un Consultor Integral…
Soy Carla Fairchild. Tengo cuarenta y siete años, y la familia y la moda decir todo para mí; son yo. Ambos son mi amor, mi vida y mi pasión. Ser…
"Sticks and stones may break my bones But words will never hurt me" Despite the fact that most of us grew up reciting this old adage, by the time we're adults…
Fact: I donated blood before I knew I had Lyme disease, possibly contaminating whoever recieved my donation. I immediately felt guilty once I learned of my diagnosis, even though I had…
2016 Acromegaly Community Bi-annual Meeting, April 29-May 1st Mark your calendars, reserve your hotel room and put a price alert on Kayak.com to attend the Bi-Annual conference of the Acromegaly Community.…
Last year, the FDA approved a record number of new drugs to treat rare diseases, according to the National Organization for Rare Disorders (NORD). In all, 21 "orphan" drugs were…
Soy Caroline McCarry. Soy una hija y un amigo; una hermana y un primo; un panadero y un escritor; una animadora y una persona que ha sufrido de TOC y…
At the age of 10, Cassie Barnby began educating medical students about a rare disorder called tyrosinemia which affects only 1 in 120,000 people. Now 17, and a senior in high school,…
While some people thrive in cold weather, one Utah woman won't be out on the ski slopes anytime soon. Jaylyn Rogers is actually allergic to the cold and exposing her skin to…
At PatientWorthy, we've talked a lot about gene therapy, but we've never really taken the time to explain it. What the heck is gene therapy? How does it work? Well, like…
Seventeen-year-old, Brooke, diagnosed with cystic fibrosis (CF), had only one wish. Inspired by Kevin Durant and his Aunt Pearl shoes designed for cancer awareness, Brooke told the Make-A-Foundation she wanted…
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