What you’re about to read may sound like fiction. I promise you, it’s not. Two men from Tanzania had their boat capsize while fishing in the Indian Ocean a few…
Kumail was diagnosed with spinal muscular atrophy (SMA) and started Spinraza in an international trial. As The Herald Sun reports, he began the treatment at six weeks old before he…
Could crizanlizumab be the next treatment to prevent pain in those with sickle cell disease (SCD)? Is this the medicine you've been hoping for? Sickle cell disease (SCD) is an…
There's some new information available about Parkinson's disease, and researchers are really excited about it. Earlier this month, researchers found that visual system changes in recently diagnosed Parkinson's patients can…
β-thalassemia major is a rare blood condition that necessitates a lifetime of blood transfusions. Despite advancements in treatments, the perfect cure has yet to be found. Bluebird Bio, Inc. is…
No two patients a doctor sees will ever be exactly alike. They all will have different symptoms, allergies, and conditions, in addition to different backgrounds, personalities, and identities. While you…
A new study detailed in Nature, involving synthetically replicating certain cell activity has been hailed as a major breakthrough in developing therapies for many neurological disease – Parkinson’s chiefly among…
According to SBS Australia, Duncan Whitcombe and his son Bailey are both living with a rare neurological condition: Tourette syndrome. Duncan has had Tourette's since he was 10. At that…
According to Port City Daily, 21-year-old Haley Swanson has been living with dermatomyositis for 10 years. She was diagnosed at age 11 with the autoimmune condition, which means that her…
You have probably seen them, or at least heard of them. In fact, I’d go so far as to say you’ve seen them within the past week or two. The…
According to Today, Quinn Hoover is an 8-year-old boy who lives in Nebraska. His body doesn’t produce enough alkaline phosphatase enzyme, causing his bones to be extremely “soft." The condition…
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…
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