Jessica Brown is gearing up to turn 11 years old on December 20th, and her mother, Jemma, is urging people to show her some birthday love. Jessica suffers from neurofibromatosis,…
Tourette syndrome (TS) is a rare, and widely misunderstood neurological condition. It causes involuntary vocalizations or movements, which are called tics. This can appear in many forms: repetitive throat clearing…
Alex Pasichnyk is a 12-year-old girl from Canada, who enjoys playing piano and swimming. Last June, her life was suddenly interrupted by a rare disease. Alex has to leave her…
Happy Thanksgiving Patient Worthians! While you're still digesting, take a look at what we have in store for you this week. If you have EDS, we have some exercise tips…
Living with a chronic illness is hard enough. When you have juvenile idiopathic arthritis, you learn to manage pain and health issues at an age when most of your peers…
What do restored clawfoot tubs, spelunking meetups, and first-grade school pictures have in common? They can all be found on social media sites on the internet. But other than connecting…
For people with postural orthostatic tachycardia syndrome (POTS), everyday activities can sap a lot of strength. POTS is a form of dysautonomia that is characterized by a shortage of blood…
No one knows how difficult living with hypereosinophilic syndrome (HES) is unless you walk in the shoes of those who have it, treat it, or have a loved one who…
People find love in endless different ways. Some people meet their romantic partner through dating apps and singles groups, others meet at work or social gatherings. One place you don't…
Researchers at the University of Sydney have discovered something big: molecules unique to the blood of people who have Multiple Sclerosis (MS). MS, a chronic neurological disease that affects the…
Next time you order up fries, you might want to think twice before sprinkling on the sodium chloride—but not for the obvious health reasons. Sodium is a no-no for people…
28-year-old Emily Rogers was training for a half marathon in Hamilton a few years ago, when she started having trouble breathing. She never could have predicted what would follow. The…
“What would I give if I could live out of these waters? What would I pay to spend a day warm on the sand? Bet'cha on land they understand Bet…
Kallman syndrome is a rare genetic condition that either delays puberty or stops it entirely. Its symptoms include a lack of secondary sex characteristics-- pubic hair that doesn't appear, testes…
Hello, I am Nicole Campanella, 65 years young and I share my body with lupus and now, osteoporosis. My entire life, there were symptoms of lupus or some sort of…
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…
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