It is easy to feel alone after being diagnosed with a rare disease. You are surrounded by others that can only empathize so much with what you are going through,…
According to The Newport Daily News, for Danielle and Kyle Ray, it was an all-too-common love story. They were school-aged sweethearts who married in their early 20s, shortly after having…
Carol Littrell and Cindy Hamilton were coworkers. And according to JDNews, Neither imagined they would ever become much closer than that. But everything changed by one chance encounter. Carol has…
An Indian family found out their little girl, Parvathy, only three months old, had primary hyperoxaluria type 1. In simple terms, those words meant she was born without the enzyme…
Photographer Martin Schoeller has partnered with Olympic medalist and renowned author Dara Torres for the Show More of You campaign for psoriatic disease, sponsored by Celegene Corporation and Otezla® tablets.…
For a long time now, I have wondered if a more natural or even metaphysical treatment to the chronic scaly, itchy, red skin I was experiencing from my guttate psoriasis…
As a writer for Patient Worthy, I often focus on successful clinical trials and recent FDA approvals for drugs. Quite frankly, I think that this focus has blinded me to…
Patient Worthy attended the NIH‘s National Center for Advancing Translational Sciences NCATS meeting and in a word: WOW! Start with the patient- the end user, the source of the aberrant…
We've all seen them - gymnasts jumping high, twirling low, and bending their bodies in ways most of us never thought possible! And if you think about it, gymnastics in…
The Internet can be a brutal place, thanks to anonymous bullying. But the Internet can also be a place of redemption, thanks to anonymous do-gooders! Case in point: According to…
So much of it “comes down to morals.” A couple struggling with cystic fibrosis may have up to a 50% chance of passing the gene on to their child if…
Idiopathic Pulmonary Fibrosis (IPF) most commonly affects aging adults, but for columnist Charlene Marshall, the disease struck in her late 20s. A diagnosis in and of itself is shocking, but…
Earlier last month, the second clinical trial for progeria was announced as completed. The trial was again funded by The Progeria Research Foundation, spearheaded by Drs. Scott Berns and Leslie…
Some good news for patients with Spinal Muscular Atrophy (SMA) and their families! There's a new booklet out with detailed information on how to navigate the increasingly complex health insurance…
As reported in Nature (an international medical publication), research scientists have uncovered the atomic makeup of an important protein found in those with Alzheimer's Disease. This is being touted as a…
Regular readers of Patient Worthy know the cost of drugs is a huge barrier to treatment for many patients and families. Additionally, the fewer people diagnosed with a condition, the…
WHEW! That week was short, wasn't it? We hope you had an awesome Independence Day Weekend in the US, and Canada Day in our neighbors to the north. This week,…
I was fortunate to have had optimistic role models during my formative years. They taught me that glass wasn't either half empty or half full, because the glass can be…
Has your healthcare provider ever talked to you about using an FDA-approved drug for an unapproved use (sometimes called an “off-label” use) to treat your disease or medical condition? It…
Have you ever tried to fit a square peg into a round hole? Short of taking a mallet to the peg, you’re not going to be successful in pushing it…
I was once walking through an outdoor festival near my hometown. There was a band playing off in the distance, but I didn’t know them or the song they were…
In a surprising development, Canadian researchers have discovered that a common drug used to treat acne may be of benefit to thousands of patients around the world who’ve been newly…
Adrenoleukodystrophy (ALD) is a terrible disease - but tell that to Ethan Jeffcoat, who spent his latest birthday playing with a python, alligator and more! ALD is a brain disorder that destroys…
Nope, we're not joking! US SWAT teams (Special Weapons And Tactics, military weapons-equipped law enforcement teams) have been asked to step in to help with backlogged FDA applications to get experimental treatments designated as orphan…
If you think this summer is hot, last summer was on fire for amyloidosis advancements and support. Our partner, The Amyloidosis Foundation produces a seasonal newsletter for all those interested…
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