I once confessed in an article on this site that I hate dancing because I'm not particularly good at it. Well, now I have another confession: I'm also terrified of…
"It's crazy that apathy can be allowed to cost so many lives" Dear Readers, How many of you are organ donors? How many of you had to pull out your…
Sometimes we look at our problems as if they were wrapped in a web of unintelligible contradictions and absurdity and we take it upon ourselves to unravel that web of…
He descubierto que a través de todo esto, mi hijo ha empezado a preguntar, '¿Cómo puedo ayudar? ¿Que puedo hacer?' En cierto modo, esas son las mismas cosas que le…
Happy Rare Disease Week friends! This week we have an exciting article on the first day of Rare Disease Week on Capitol Hill (though technically, the first day was at the…
I'm sure you've heard these popular phrases: Don't judge a book by its cover Looks can be deceiving You never know what someone else is going through until you walk…
Admitelo. Nunca superaste la noche de brujas Oh, por supuesto, es posible que no sea capaz de anotar esas barras de chocolate diversión de tamaño dulces de los vecinos más…
Kathy is the momma of Emma, a nine-year-old girl who grew up relatively normal. She was spunky, energetic, and cheery. But things changed for Kathy and her family when Emma was…
If you're curious about narcolepsy from a first-person perspective, there's an awesome YouTube channel you should subscribe to. Sleepy Sarah Elizabeth is creating a video journal detailing her struggles with…
About a week ago, my best friend’s husband had a life-threatening emergency and was rushed to the ER. So when I got the call late that night, I too rushed to…
My story starts back when I was around 18 years old, almost 20 years ago. At the age of 18, I had my first DVT, deep vein thrombosis (blood clot)…
It can be hard sometimes for your friends, loved ones, and peers to know what to say when you’re dealing with chronic illness. “Feel better soon” Doesn’t really work. There…
Si, el fin de semana del 9 de Octubre, vio a la Hereditary Angioedema Association (HAEA) en las nubes y feliz-- pero no de la manera en que estas pensando!…
In the summer of 2001, my neck muscles began to involuntarily contract, causing my head to pull to the right. I had no idea what was wrong. My doctors were…
Technology today is taking us to new (un)comfortable heights, at a pace few would be surprised by. For those who are living with narcolepsy, this self-piloting drone could be a…
Estimada Jessica, Te miro y veo determinación. Las cosas son tan difíciles para usted ahora, corriendo de un hospital a otro. Yo sé que usted nunca imaginó que su vida…
There's nothing more important than being able to create collaborative, meaningful and positive conversations between Healthcare Providers and Patients and vice-versa. That's why, for the remainder of the year, you'll…
30 days until April 1st when Patient Worthy will announce the winner of a $500 travel stipend to the 2016 Acromegaly Community Bi-annual Meeting, April 29-May 1st (which is free). Patient…
A los 5 años de edad, Hadley Alexander no es normal. Cada mañana, su día comienza oficialmente a las 7 am Ella convenció despierto por sus padres y, a través…
This week's Meme Monday is rather special. Our chief editor is on the ground live tweeting from NIH during Rare Disease Day 2016 #RDD2016 - her first thoughts: "HERE, YOU…
It is Rare Disease Week 2016 and there were hundreds of advocates at Rare Disease Day today at NIH in Bethesda, Maryland. Patient Worthy has been providing live coverage from the NIH so…
Amanda Vasas has a special reason for wanting to elevate awareness about narcolepsy, a chronic sleep disorder she was diagnosed with at the age of 16. She doesn't want anyone else to…
At 103 years old, you might expect your hands to shake a little, or maybe a lot. But what if you had an eagle-eyed medical student helping you with your meal? Suddenly,…
Good day to you PatientWorthians! We can't express to you just how excited we are to be attending this year's Rare Disease Day® at the NIH main campus. As laid out…
Aaron es un graduado de la universidad de veinticuatro años de edad que vive en Alabama. Él es un empresario que se especializó en gestión de pequeñas empresas. Su padre…
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