You see them everywhere--although they look out of place in the grocery store, or at the movies, or--even worse--grooving in dance club. Why are they not in school? They're teachers,…
We all know the classic yoga "type": thin, white, thin, "new-age," thin, Gumby-like limbs. Did we mention thin? Over the years, yoga (especially the cult-ish torture/nirvana that is hot yoga)…
If you’re one of the estimated 1 in 25,000 to 50,000 people in the U.S. living with common variable immunodeficiency (CVID), regular IV injections are a fact of life. Because…
Recent twitter developments in the Chronic community have involved the possible discovery of a new mascot. Karl Austin (@Porkchop275) came across a picture of a shark, and after determining that…
When the House passed the 21st Century Cures Act in a groundbreaking 344-77 vote, the decision felt like a defibrillator, deploying life-saving shocks to the healthcare system. Critics may…
Look out WebMD. Google's about to leave you twitching in the dust... Would you believe one in 20 Google searches are health-based? Ok, yeah, probably not that far-fetched, BUT... don't you…
Immunodeficiency’s can cause weight gain. That’s no secret. But oftentimes, Common Variable Immunodeficiency (CVID) patients are surprised when they begin gaining weight. CVID is characterized by low antibody levels and…
Dystonia May Slow Her Body, But It Can’t Stomp Her Spirit Few times in life are as exciting—or as hectic—as the last days of high school. Between friends and classes,…
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…
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…
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.
