Before a hit and run driver struck Pat Brogan as he rode his bicycle, he'd never heard of dystonia, a brain disorder that causes severe muscle cramping and pain. But…
As summer winds down, many of us are scrambling to get onnnnnnne more vacation in. Whether it’s a day on the beach, a picnic in the park, or a road…
The Working Dog: Service Dogs Go for the Gold While the 2016 Presidential campaigns get underway, Americans are taking to the polls to vote for their favorite finalist in the…
Great Ganja! Pot Patch On the Way...And We're Not Blowing Smoke. Zynerba Pharmaceuticals is working towards patches to deliver cannabis-derived chemicals straight to the bloodstream. But before all the Mary Jane maniacs get…
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…
Ahh, the miracle of life. Though it’s a beautiful thing, pregnancy can become an increasingly painful thing for those with arthritis and related conditions. And although ankylosing spondylitis occurs mostly…
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…
Alan Cassels is a drug policy researcher who, in the August issue of Common Ground magazine, wrote about how pharmaceutical companies and drug marketers employ misdirection so consumers think a medicine does something…
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…
Kathy Antilla recalls the moment she heard her son, Issac, say those words she thought she'd never hear: "Mom! Look at me! I'm just like a normal kid now." In…
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…
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…
No one knows the dangers of bad cholesterol better than patients with familial hypercholesterolemia (FH). According to the FH Foundation, there are two forms of FH. 1) HeFH, and 2)…
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…
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.
