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…
Son of a biscuit! I'm a little upset and I'll tell you why, but first I have a confession to make: I don't actually live with any of the conditions…
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…
Justin Caba sat and watched a basketball game. His mind however, was far from the friendly competition. Watching his favorite players, all far taller than average, made him wonder about…
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…
Did you guys know Rare Disease Week is next week? Come participate with us! This week however, we wanted to address some rare diseases of our own: Lyme and POTS. Though POTS…
Let’s say for a moment that you’re a new parent. First things first: Congratulations, we’re so happy for you! Now, let’s also say that hidden among all the tests and…
The Cystic Fibrosis Foundation is an incredible resource for anyone living with the condition. Recently, they put together advice to help those living with CF manage their treatment plans. Among the highlights: If…
All of us have been there: you're at work and an important deadline is coming up--your boss is breathing down your neck, and your co-workers are micro-managing the project. It's…
¿Tiene el nombre Miastenia Gravis un sonido un poco familiar? Probablemente no, pero si eres un fan de la serie #Empire, usted vino a través de ella cuando Lucious Lyon…
Tamara Isaacs Ciocci spent 21 years searching for a diagnosis for her type 1 Gaucher disease--despite the fact that her own father was a doctor. Although, that's not too surprising…
Q: What is Gaucher Disease? Gaucher's is a genetic disorder with varying symptoms that range from mild to severe physically as well as neurologically. People with the Gaucher have a…
Last week at the 4th Systemic Sclerosis World Congress the results of a study conducted by University College London and Actelion Pharmaceuticals were presented. The findings? A sign of hope.…
There is an area in northern Minnesota given the general term or name of the Boundary Waters; it’s a cluster of many islands within a large body of water that…
Aquí en PatientWorthy, creemos que la risa puede ser la mejor medicina. Humor irónico es sorta lo nuestro. Pero para aquellos que ofenden fácilmente, o tal vez incluso moderadamente intolerante,…
Meet an incredible advocate for Huntington’s disease. Chasity Boatman grew up witnessing the tragic effects of this degenerative and fatal disease first hand and has now become a dedicated and…
For more than half a century, Grandview, Michigan, resident Bruce Mannes has taken a drug Cuprimine (penicilamine) to manage his Wilson's disease, a genetic disease that prevents the liver from properly filtering the…
Okay, people! Let’s hear it for Kristen, a fiercely determined young woman who refuses to give up after being diagnosed with postural orthostatic tachycardia syndrome (POTS). I feel absolutely dumbstruck…
Candace recogió sus cartas, lanzaron "Oceans" en el fondo, y apretó el juego cuando comenzó a grabar un video explicativo de su rara enfermedad con frecuencia mal entendida, de Inmunodeficiencia…
According to Cosmopolitan, Crista Procopio, a woman from Phoenix, Arizona, had a tough time getting through to doctors that the severe dizziness, pain, and digestive issues she was living with were…
"The truth is, we don't always know how most medicines are going to work with patients until we prescribe it to them." This is according to Dr. Lynn Webster, who formerly…
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