Greetings Patient Worthians! This month we are highlighting Amyloidosis, a rare disease that affects organs such as the heart, kidney, liver, the nervous system and more. While there is no…
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!…
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…
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…
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…
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…
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.…
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…
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…
Shortly after Joshua Holdner was born, he entered into a fight for his life. He had a hard time nursing, and when he did eat, it was quickly followed with…
In the “As If Chipotle Didn’t Have Enough Problems Department,” they allegedly just did another scummy thing. So here’s the Chipotle Edition of How To Make An Enemy Of The…
He’s a cop who works three additional part-time jobs to make ends meet. She’s a homemaker now, taking care of their three children, ages seven, three and a half, and…
Anyone who’s ever been in a wheelchair or knows someone who has, knows the frustration of “you can’t get there from here.” All you want to do is live your…
So let me get this out of the way upfront: I’m no scientist—and no, I don’t play one on television. I struggled with science in school, which is why I’m…
When the word came out that a sick baby was in need of a bone marrow transplant and no one in his family was a perfect match, students at Emily…
Study Title: Phase 2, Randomized, Double-Blind, Placebo-Controlled, Parallel-Group Study of N91115 to Evaluate Efficacy and Safety in Patients With Cystic Fibrosis Who Are Homozygous for the F508del-CFTR Mutation Treated With…
Todo el mundo le encanta un poco de misterio, excepto cuando se trata de tipos ominosos de enfermedades autoinmunes. En un artículo de Rare Connect, un sitio web que conecta…
On their face, exercise and illness would appear to be diametrically opposed states of mind. But there’s plenty of anecdotal and scientific evidence to suggest that overall physical fitness can…
Okay, so speaking as a dude, I have a confession to make: Dick jokes make me laugh. They make me laugh hard. (Sorry…) And most guys, whether they admit to…
Guys, I am so pumped to be from Virginia right now. Having gone to the University of Virginia, I definitely have state pride, but the latest legislation passed in my…
Severe Combined Immune Deficiency (SCID), a primary immune deficiency, was once a fatal disease but is now considered a "pediatric emergency," needing immediate diagnosis and treatment. If it's caught right…
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