The future is now. A small robot called AV1 will allow a sick boy to experience the classroom from home. When you're diagnosed with a rare disease, it's hard to…
There is a definitive group of people out there who love to hate on message boards and crowd-sourced information websites, like wikis. Their chief complaint is that anyone can put…
You’re used to seeing Santa at his workshop, at the mall, under your tree—but at an art exhibit? Well, for one Alaska teen living with cystic fibrosis (CF) that became a…
For patients, caregivers, healthcare providers, and anyone interested in learning more about liver diseases, there is a website called Focus. This website is organized by CLDF, which stands for Childhood…
Natalie Stokes was always the curvy one in her group of friends. But when she started putting on more and more weight despite cutting down to only 1,000 calories a…
Amber and Ryan Dollinger were preparing for the birth of their second son just as Hurricane Harvey was plowing toward them dead-on. They fled their Beaumont, Texas home and found…
This is the story of Eddie and Sarah Yang, their children, and challenges they face with a rare disease called congenital central hypoventilation syndrome (CCHS). Eddie and Sarah married in…
In Hartford Connecticut, 12-year-old Emma Becker has been fighting the brave fight against cancer for the last four years. Her condition: Neurofibromatosis, a condition that causes growths of tumors to…
According to a lovely post on the International Waldenstrom's Macroglobulinemia Foundation website, Julianne married the love of her life at the age of 19; her husband John was 30. In…
When raising children, parents spent a lot of time discussing the challenges of child-rearing with others, reading articles and books, and wondering if we were doing the right thing in…
Des Moines news anchor, Elizabeth Klinge, is receiving quite the social media buzz after posting heart-warming photos of her daughter Hanalay and her notable port-wine stain. The photos garnered a…
What would you do if your child was born with a rare neurological disease? So was the case for a small town boy. In Orangeville, Ontario, Ryder Ouderkirk lives with…
I was laying on the cold, hardwood floor again after drinking phospho cysteamine(the earlier form of Cystagon, treatment for Cystinosis). My stomach was roiling and I was overheating from the…
The love of creating radio is something that can bring people together, according to the Riverine Herald. Whether it’s the perfect mix of melodies or the desire to connect listeners…
In Ancient Greece, you had to be part divine to be called a hero. Achilles' mother was Thetis, a rather minor goddess. Heracles’ father was a god you might have…
POW! BANG! KAPOW! On a typical day, Thor, Batman and Wonder Woman focus on purging the world of archenemies that threaten our very peace and prosperity. And the way things…
What do you do when you are facing the unknown? We all have to at some point. And many of us will face the unknown while sitting in a doctor’s…
It’s fair to say that many (if not most) Americans are inseparable from their smart phones, and that a device that was pure sci-fi 25 or 30 years ago is…
According to an article in The Campbell River Star, NHL stars, Rod Brind’Amour and Ryan Nugent-Hopkins of the Edmonton Oilers traded their hockey sticks for golf clubs (sort of)—all to…
Day two of Global Gene's 2017 Patient Advocacy Summit started out with a fire side chat with Christopher Austin, MD, the Director of the NIH's National Center for Advancing Translational…
Earlier this year, Kyle Petty made his way across the country for his annual fundraiser appropriately called "Ride Across America." While Petty, a famous NASCAR racer, says one of his…
It can be pretty difficult to live in a world where very few people understand your rare disease life. Thankfully, there is a way to find others through the internet,…
I don’t think it comes as a shock to anyone to say the costs of drugs are too damn high. The rarer the disease, and the smaller the patient population,…
Since this is my first contribution to Patient Worthy, I thought I would spend some time writing about the process it took to receive my diagnosis of idiopathic pulmonary fibrosis…
Raise your hand if you like Adele, the English singer-songwriter! Well, hopefully, your hand is raised, but if not, that’s okay too. I’d still like you to consider Adele’s actions…
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