Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] Learn why this Viral Message is so Important After a waitress took her speech and…
Cysteamine Bitartrate is its name, and savin’ lives is its game. It’s not often that you hear a drug referred to as “life-saving” (probably due to legal ramifications), but that’s…
Rare Connect explains the life of Annie Kwakkel who was born with cystinosis, a genetic condition that affects approximates 1 in 100,00 to 200,000 newborns worldwide. Today, people living with…
What does roasted corn have to do with cystinosis? If you're scratching your head, don't worry: At first, we were too. But in Buffalo Grove, IL, an annual Corn Roast sponsored by…
Everyone deserves to have a hero. Whether it's a fictional one that fights baddies or a gentle giant who use to tuck you in at night and read you bedtime…
On August 17, 1999, Ian Kent woke up with a gnarled body. "Two years later I learned to walk again," he told the Toronto Star. Kent had been a competitive…
Parents who love their children can appreciate when treatments are available to bring hope and healing when their young ones are sick... On August 17, 2015, one more ray of…
Imagine being worried because your giggling 6 month old son won't eat, is constipated, and drastically losing weight. The doctors tell you he has a rare disease that affects all of…
On a press release reported from BusinessWire, the Cystinosis Research Foundation, CRF, awarded unparalleled grants of $1,022,879 to research institutions making it possible to further investigate innovative treatments for cystinosis.…
Cystinosis, one of the many rare, genetic diseases in the world today... Like in any good article, the reader should first be provided with a brief history of the article's…
For a "normal" teenage girl, life's biggest problems usually include not being able to decide which outfit to wear to school, which boy to say yes to for the upcoming…
The Cystinosis Research Network (CRN), a charity organization based out of Chicago, just finished hosting their summer travel conference, "Dream, Achieve, Inspire" International Artwork Showcase. Over 100 artists were featured, from…
Dan Giancola is about to take the ride of this life. Literally. The St. Catharines Standard details his mission to raise more than $100,000 for Abbi, a nine-year-old girl fighting…
Jake Krahe, a youngster from Montville Township, Ohio, has been living with a rare disease since he was 19 months old 19 Action News reports. The specific diagnosis is cystinosis, a…
For a disease that has so little attention drawn to it, there’s quite a few people that want to bring it to the forefront in the form of a traveling…
Now in its fifth year, a team of highly motivated cyclists from Sandpoint has once again pedaled some 3,000 arduous miles across the United States, participating in the annual Race…
You know those commercials, "What would you do for a Klondike bar?" Think about that, but instead of getting ice cream you get to play baseball. What would you do? Highschooler…
Tahnie was 16 months old when she was diagnosed with the rare disease cystinosis. Her parents were told she would most likely not live past the age of 10. During…
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.
