Abigail, a fifth grade student, originally took a trip to the Capitol to advocate for more research on tuberous sclerosis complex (TSC). The trip had unexpected results. As the Daily…
Over ten years ago, four close friends founded a charity called Angie’s Hope. One of the founders, Angie Lee, has been living with spinal muscular atrophy (SMA) since she was…
Baby Dylan had some sort of medical condition, as reported by The Global and Mail. His family was sure of it. He slept all the time and when he was…
Every rare disease patient deserves an organization dedicated to working towards their specific condition. These organizations provide invaluable patient advocacy, information, support, and research funding for small communities that need…
I recently read a report on the inspirational Lakiea Bailey, who has a rare disorder called sickle cell anemia. This disorder targets her red blood cells. Sickle cell diseases can…
According to Seacoast Online early this year, Cohl Capparelli was diagnosed with spinal muscular atrophy (SMA) about two years ago. SMA is one of the diseases that the Muscular Dystrophy Association…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
Image source: https://healthyhandyman.com/ On the website ShortBowelSyndrome.com, people living with the syndrome share their personal stories and experiences and give tips, tools, and advice to others living with short bowel syndrome…
Losing a child is a loss like no other—the most devastating experience a parent can face. And for one daddy who lost his little girl to mucopolysaccharidosis, a very rare genetic…
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