Two university professors in Japan are working to make a difference in the lives of people who suffer from narcolepsy and cataplexy associated with narcolepsy. Dr. Hiroshi Nagase and his…
To the casual observer, one-year-old Thor Uran is a happy, healthy toddler with a winning smile and a shock of blond hair fitting for his super-heroic namesake. But Thor’s parents…
Sometimes, when it comes to dealing with pressures out attitude toward others will inevitably fluctuate. This doesn't mean we mean to do it, it's just a reflection of our current…
Gaucher disease has come a long way, but that doesn't meant it's easy to understand when you're first diagnosed. Luckily, these facts can get you started: Fact One: Gaucher disease affects…
Back in the 1975, the movie Jaws came out right before the summer season began. The movie posters showed the gaping open mouth of a Great White shark with a…
Happy Tuesday, Caregivers! I say this in all sincerity because as caregivers—it’s easy to find yourself actually dreading the weekends, right? You know what I’m talking about. You know that…
As with other PW memes, this meme is aimed at getting you motivated, getting you pumped to find the silver lining in the earth shattering, life altering shit-storm that is…
Anyone who’s lived with narcolepsy knows how tough it can be to find other people who can relate to what they’re going through. The folks at the Narcolepsy Network know…
CysticLife.org, una red en línea para la comunidad de la fibrosis quística (FQ), se está embarcando en un esfuerzo de recaudación de fondos para apoyar la investigación histórica impulsado por…
Wake up, Narcolepsy! When runners leave the starting line in Hopkinton, MA, for this year's Boston Marathon, the pack will contain some extra motivated individuals. TeamWUN will once again sponsor "wunners"…
Yo soy hispanohablante de nacimiento pero me he convertido en una persona plurilingüe. Hablo Inglés, español y portugués y estoy aprendiendo a hablar francés ahora. La importancia de saber hablar más de un…
Recently I read an interesting article about a new med that’s been shown to speed the production of blood platelets by as much as 40% which could potentially improve the…
Thanks to narcolepsy, Brianne had an unusual childhood. She began having the symptoms of narcolepsy around the age of seven. As a young girl, Brianne would sleepwalk into the kitchen…
Wheelchair pillow: $300 Monthly prescription costs: $400 The cost of having multiple autoimmune disorders? Exorbitant (and growing). On websites like PatientWorthy, we talk a lot about the physical tolls rare…
Recently, a website called The Mighty invited its readers to write a letter to the rare disease or mental disorder that affected them or a member of their family. One mother…
One Thursday night, I was completely emotionally wiped out. There was something that went down in my family and I spent that evening on the phone and in tears. I’m…
Oh Canadá, la gente piensa que eres todo "por favor y gracias", y el jarabe de arce, pero conozco la verdad: Eres un luchador y esa lucha es más evidente…
10 cosas que he aprendido viviendo con el síndrome de Ehlers-Danlos 1. No es tan malo ser espontáneo Cuando era más joven yo tenía planes y listas para toda mi…
Our lives were forever changed on March 29th, 2004 – the day my son Tailen was born. There isn’t a day that goes by that I don’t wish that we…
Happy Easter Weekend Patient Worthians! And if you don't celebrate it, Passover is only a month away. If you don't celebrate either one, then why not celebrate life?! This week we…
Nolan is a rare dad not only living with, but running with dystonia. Patient Worthy has had the privilege of meeting him, working with him in a recent photo shoot,…
April 15th marks the deadline for the FDA to approve or deny approval for Mycapssa, a drug created by biotech company Chiasma. Mycapssa is pending approval for the treatment of…
As you know from my previous posts, I am an anti-inflammatory nut. But as of late, I have gotten a sweet tooth- ya introduce sugar once, and it's all down…
In this election year, a good way to practice being politically active is to write a letter supporting a bill with the catchy name Orphan Product Extensions Now, Accelerating Cures and…
PatientWorthy está asociando con CysticLife.org para poner de relieve algunos de los miembros en su increíble comunidad! CysticLife.org surgió de un blog iniciado por paciente con FQ, Ronnie Sharpe, para…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
