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…
I second-guess every decision I make. Should I wear my hair pulled back, or will it just flop in my face all day long? Should I wear heels and risk…
Parents strive to make a child’s life better—even before the baby bundle comes into this world. The sacrifices parents make for their children are innumerable, and one dad from Mississippi…
Only 1 in every 250 people have familial hypercholesterolemia (FH) worldwide and it is widely underdiagnosed with more than 90% of people not knowing they have it. In fact, according…
We've all heard it before: "Stay positive! Look on the bright side! Don't let the little things get you down!" The fact of the matter is it's way easier to…
September is National Blood Cancer Awareness Month and September 15th is World Lymphoma Awareness Day. To find out more, check out the Lymphoma Research Foundation (LRF). Not only does this…
Rare diseases like ALS and SMA cause damage to motor neurons. Often, these conditions lead to death, in part because muscles in the chest are wasted away and the patient…
On September 28th, 2017 at 9 PM EST, a new online, mindfulness-based, stress reduction course will be given by none other than the extraordinary Julie Desch, MD. She is a physician…
"Be strong," they say. "Don't give up." However well-meaning the sentiment, those phrases sometimes ring empty. What does it even mean to be strong? To persevere? I think Jackie Barber's story…
The Indiana Hemophilia & Thrombosis Center in Indianapolis has long been a leader in innovative patient care. They teamed up with MicroHealth, a company founded by hemophilia patient Aaron Craig…
This year marks the end of a second decade of achievements for EURORDIS, now formally known as EURORDIS-Rare Diseases Europe. EURORDIS is a non-governmental alliance that is the voice of…
The International Foundation for Functional Gastrointestinal Disorders website has a section where patients can share their story. Hollie's story is one of the featured stories. Her story starts in 2009…
Most people do not enjoy going to the dentist, but for patients with down syndrome, this normal task is even more of an ordeal. Patients often have a difficult time…
On behalf of the CNF: Applications for the 2017 Harnett Mini-Grant: Now Being Accepted In January 2014, the Harnett Mini-Grant was founded by Mr. Michael Harnett, as an enduring memorial…
When I was undergoing a tough treatment and reeling from the death of my God-sister, I was definitely down in the dumps. I couldn't really walk and I was hooked…
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