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…
When a doctor says it’s necessary to do a lumbar puncture on your two-year-old son, momma bear instincts kick in. Health News Digest reports that’s what doctors recommended when Lisa…
The people have spoken. The Patient-Focused Drug Development Initiative of the Food and Drug Administration (FDA) has announced the selection of diseases it will address during 2016 and 2017. Which…
No one likes shots. We are talking needle shots. And no one likes hereditary angioedema attacks. So it’s no secret that people having an HAE attack don’t want to give…
In this blog posted to the Michael J. Fox Foundation for Parkinson's Research website, retired attorney Allison London, who also has dystonia, talks about the gifts that come with having…
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…
Here’s the scenario: You or someone you love has just been diagnosed with high cholesterol. You’re probably on overload trying to digest what this life-threatening condition means, the impact it…
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…
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…
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…
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…
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…
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…
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…
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)…
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.
