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…
Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] Move Over Barbie. This is the Model Little Girls Should Idolize In this interview ankylosing…
Three cheers! THANK YOU University of Kentucky, Addgene, and University of Pennsylvania We wait, and wait and wait for research and hope that it will bring discoveries in time. But…
There are lots of ways to deal with stress. Some are healthy, some…not so much. For many, smoking is a “go-to” stress reliever. Never mind that it probably causes more…
BREAKING NEWS! There may soon be another treatment for PI patients! The company ADMA Biologics, Inc. has developed a new treatment option, RI-002, for patients who are immune-compromised. It’s currently…
Should marijuana be used for medicinal purposes? We obviously aren't the first to ask this question as the nation debates the use of the famous Jamaican herb. But if ankylosing…
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…
Hereditary angioedema, or HAE, is a life-threatening rare genetic disease with a lot of still-unanswered questions. However, scientists at the Karolinska Institute in Sweden, Science Daily reports, may have answered…
Do you know who Maree McRae is? If you don't, read her in-depth interview featured on HollywoodtheWriteWay.com. Or, for all you lazies, here are the bullet points: McRae is a singer/songwriter who…
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…
July 21st, 2015: Pharmaceutical giant, Amgen, was awarded a stunning approval from the European Commission for Repatha, a breakthrough cholesterol-lowering drug as reported by the St. Louis Post-Dispatch. The drug…
Honest Abe’s blog, a catch-all site for video games and science, can now add rare disease champion to its description. The real Honest Abe was known and will forever be…
Even when your LDL cholesterol is shooting through the roof, it can still be tricky to want (and choose!) the “healthy” thing to eat. But we’ve made it easy. These…
Olivia Trueb lives every teenage girl's dream. As in, she’s got a team of professional football players that are wrapped around her finger, and much to her surprise, she can…
Charis is a Californian, advocate, activist, avid biker, blogger, and model. She was awarded the 2014 Progress in Policy Award by the Arthritis Foundation, Pacific Region last December for her efforts…
Most parents are eager for their child's first words. But as the Daily Mail in the UK reports, Stevie and David Taylor waited in vain for three years to hear…
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…
If you’re one of the very few people in U.S. living with familial chylomicronemia syndrome (FCS), the odds are good you that you know more about it than your family…
Glucose. It means sugar, right? It's in your body, right? But how does it get transported, and how does your body know how much it needs to transport? Most importantly,…
Have you ever heard of Glut1 deficiency? Based on a story featured on News-Medical, neither had the parents of their diagnosed daughter 4-year-old Chloe Olivarez. Glut1 deficiency is a rare…
Heterozygous Familial Hypercholesterolemia (or HeFH), ever heard of it? It’s a mouthful. It’s also a condition that causes highly dangerous cholesterol levels and, if left untreated, can lead to heart…
Mangled finger? Severe bone bruise? Broken back? Nope, this isn’t a catalog of injuries from Fight Club—these are some real injuries the Miami Herald describes that now 21 year old…
It’s not often that rare diseases cross with pop culture, but when they do, it’s worth tuning in. This summer, Lifetime Television show, “The Balancing Act,” featured an educational episode…
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…
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.
