Since my son was old enough to hold a video gaming system, he's been hooked. They're fun, challenging, and (sometimes) educational. I tell myself that video games may help improve…
According to a press release on Newswise, there's a one-two punch that could save the lives of thousands of people living with drug resistant rare cancers. Researchers at UC San Diego…
When I was a kid, my parents had one TV. It was a 19" black and white set with a rabbit ear antenna that only picked up two networks (when…
The heart-breaking story of baby Charlie Gard, who recently died of a rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome, touched the lives of families around the world. Although…
Duchenne muscular dystrophy (DMD) is a heartbreaker for the the 250,000 families worldwide whose sons are born with this debilitating, progressive disease. It is rare, and yet the ripples of its…
Britain may be making its Brexit, but people with rare diseases may want to keep a close eye on the European Union (EU) and its newly formed European Reference Networks (ERNs).…
Among the many uses of social media, medical diagnosis for rare diseases, for everything from acromegaly to Zellweger spectrum syndromes, may not be the first that comes to mind. But…
When I was in second grade, a boy named George accidentally ate a peanut M&M and turned bright red. We thought he was choking. This was in the 1975, when…
Over the years, I've talked with dozens of people with Parkinson's disease (PD). Male or female, old or young, they tend to have one characteristic in common, even if they…
Most kids love robots. So the idea that a kid with cerebral palsy (CP) could improve the way he or she walks with the help of a robot is just…
Acute diagnosis is the Holy Grail for all illnesses and conditions. But what if you could predict the likelihood that you would develop a deadly disease and take steps to…
This August, it’s time to spread the word about a rare disease that may not be that rare after all. It’s called autoinflammatory disease and is actually a category of…
If you or someone you love has been diagnosed with idiopathic pulmonary fibrosis (IPF), it's easy to become discouraged by the lack of medical options. Although almost 50,000 people a…
September is Global Pulmonary Fibrosis Month. If you or someone you know and love has a form of this devastating disease, you know how important it is to spread awareness…
You've got to be dedicated to train for a marathon. When Brit Joe England signed on to raise pounds for the Alkaptonuria (AKU) Society, he was optimistic about finishing the…
Most people take breathing for granted — until the ability to breathe is impaired. People with idiopathic pulmonary fibrosis (IPF) know this all too well. Without the ability to readily…
Constipation. It's not the first symptom you think of when considering the effects of Parkinson's Disease (PD). Tremors, rigidity, insomnia, and depression are all well-known symptoms of PD. Constipation? Not…
A little thing called "genomic technology" could just be a game changer for people who suffer from idiopathic pulmonary fibrosis (IPF.) What is genomic technology? Glad you asked. Genomics is…
Our nation's public health centers are the unsung heroes of health care. Each year, more than 9,000 health centers around the U.S. serve over 25 million Americans, including 300,000 veterans,…
Parkinson's disease (PD) and amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's disease) are both neurodegenerative conditions that have no one definitive cause—though there are risk factors linked to…
Do you remember the "Heartbreak of Psoriasis"? Back in the '60s, some Mad Men came up with that catchy campaign to sell a "new healing discovery" that could clear up…
As a research geek who has researched and written dozens of articles about Parkinson's disease (PD), let me assure you there is a lot of bad information out there. But there…
Dogs have been helping humans for centuries. As early as the mid-1700s, dogs were being used by the blind as guides. In 1929, The Seeing Eye, the first guide dog…
When my son was born he didn't exhibit primary immunodeficiency (PI) or any of the other conditions on the newborn screening panel. Still, I fretted over just about everything. He…
As a young woman, my friend Ruth Williams might have been concerned about getting breast cancer, but she never considered the condition that would threaten her life. She was 23,…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
