Iasmin Omar Ata's stunning graphic novel, Mis(h)adra, dives into the vibrant, hypnotic world of epilepsy. Although it only came out about a month ago, it has received critical acclaim from…
We don't laugh because we're happy – we're happy because we laugh. -William James There is nothing funny about having a rare disease, but learning to laugh as often as possible…
The National Organization for Rare Disorders has teamed up with Children's National Health System for the Rare Disease Institute. This will be the first center to primarily focus on and…
This past August, NHL veteran Brian Boyle was tired, but as a father of two children, being tired didn’t really surprise him. It was a diagnosis of chronic myelogenous leukemia…
Epidermolysis bullosa (EB) is a rare disorder, in which a genetic mutation disrupts the production of a protein that holds the skin together. This creates intense and painful blistering externally,…
The story starts when Amy Miller was 18 years old, gearing up to start her first year in university. She wasn't pregnant, but she had missed her periods for the…
Reverend Jesse Jackson has been a guiding force in Civil Rights activism for over 50 years. He's a man of many facets: a baptist minister, presidential candidate, powerful orator, and…
Three years ago, a rare disease was spawned that made its way into the medical field. Over 100 people gathered in San Diego to research the disease within a new…
The story starts in a Ana Alvarez's flat in Lima, Peru. Soon after, Ana will convert this apartment into a marijuana laboratory and underground medical center. The public will largely sympathize…
Happy November! This is one of my favorite times of the year with the clean, crisp air and the leaves changing color. However, I am not a fan of the shorter…
Earlier this month, the FDA approved Zelboraf (vemurafenib) for Erdheim-Chester disease (ECD) with BRAF V600 mutation. The final results indicated a response rate of 54.5%. This is the first FDA-approved treatment…
The exact causes of avascular necrosis are often a mystery. Much the same as the lives of dinosaurs. That's right. Dinosaurs. Keep reading to learn more about this unlikely connection,…
Have you ever googled the word "precision"? Words linked to turbine engines, long-lasting tires and even industrial cameras pop up. But, what I didn’t see was anything related to precision…
Earlier this month, The Lancet Neurology published results from its PATH study (Polyneuropathy And Treatment with Hizentra), which showed efficacy in treating people with chronic inflammatory demyelinating polyneuropathy (CIDP). Great news and hope…
It’s a fact. Lifestyle and dietary changes are an important part of the formula to help lower “bad” cholesterol numbers. Whether you add more heart-healthy foods, healthier fats, or whey…
Big news for those with hemophilia! On Thursday, the FDA approved Hemlibra (manufactured by Genentech), a weekly self-injection for hemophilia A patients who have developed resistance to standard medicines for preventing…
Bleach baths. Hairbrushes. Scratching at skin lesions. Such is daily life when trying to find relief for the itching of severe atopic dermatitis (AD)--commonly called eczema. Now, these challenges are…
Jane Hamilton, a student at Century High School, Minnesota, has Tourette Syndrome, which is a disorder of the nervous system that can cause involuntary vocalizations and movements, which are commonly known…
When something in our computers doesn’t work or has a defect, we download a “patch” from the manufacturer, and call it repaired. With ongoing scientific research and development, the practice…
“It’s all in your head.” I dare say these are words that many people living with a rare disease, including dystonia, have heard. It’s absolutely unfair, aggravating, heartbreaking, maddening. I…
Children who like to dance are easy to identify. You’ll see them tapping their toes to pop songs, moving to the tunes on a television show or, in my case,…
Happy Friday Before Thanksgiving! As you prep your tummies for the feast next week, take a dive into some of our top stories this week. There is an article honoring…
Everyone with dietary restrictions knows the struggle of going to the grocery store, scanning the nutrition, and sighing when it doesn't quite meet the requirements you need. That exasperation, looking…
Looking different as a kid (or adult) can have a serious impact on your self-esteem, particularly if you’re dealing with something that also affects your health. Hair loss due to…
You've heard about Hurricane Irma and Maria that hit Puerto Rico, destroying schools, hospitals, and leaving the island without power. You've seen the devastating photos. Millions of people living there…
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.
