When Raeno Brendtro was asked to sit down after her diagnosis, she refused. She needed to stand for as long as she could, now that her time was limited. The…
Fourteen years ago, Sabrina "Bria" Baumann's mother, Sophia, saw a mass growing in a sonogram. Something was wrong. Whatever was growing was on her chest and her neck, and the…
Shantee Anaquod has gone from planning the end of her life to planning the rest of her life. After being bed-ridden for over a month with the fatal disease, atypical…
The Green family is trying to raise money for their daughter's life-saving surgery and it's now becoming a race against the clock. 18-year-old Ylena Green is suffering from Ehlers-Danlos Syndrome,…
Disease and community are both powerful things. When AAG, a rare disease affected Erika's life, her community fought back with her. Find out how below, and follow the full story…
All her life, Caitlin Shaw, a 15-year-old girl in England, has faced a number of serious health problems. She was born with numerous heart complications, as well as Kyphoscoliosis and…
It's been on ongoing cancerous battle for nine-year-old Jacob Thompson. Ever since he was 5, he's been dueling his rare neuroblastoma. And after the treatment failed, the cancer has spread…
Former Jersey Boys star Jeff Leibow, organized his first Neurofibromatosis Hope benefit concert in Las Vegas in 2011. His hope was to make it an annual event that would go…
Puberty, development, and menopause - most parents have found that explaining these concepts to kids, though entirely natural and unavoidable, comes with a certain degree of discomfort. In girls in…
We constantly hear about cancer deaths, but every once and a while, we hear the rare cases of cancer survivors. Linda VanDershaaf is one such survivor and today she is…
Lily Ayres, at the ripe age of 2, has been fighting a rare disease ever since she was born. Little Lily suffers from Moebius syndrome and because of it, she…
A young girl from Australia had her period when she was 4-years-old. According to Independent, young Emily Dover is well on her way to experiencing menopause at the young age…
When three-year-old Jake Burgman was born, something was wrong. Three months into his life, the Burgman's noticed that Jake was unable to lift his own head, among other developmental delays.…
In a small UK Village, locals will be congregating at a popular pub to raise money for a disabled and epileptic boy whose family cannot afford his medical gear. Microcephaly…
Great Strides, hosted by the Cystic Fibrosis Foundation (CF Foundation) is the largest national fundraising event for cystic fibrosis. Over 125,000 people a year lace up their walking shoes to…
Tammy Grover is a mama bear in every sense of the word. She keeps her cubs close and has dedicated her life to trying to help them survive. Two of…
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…
Maybe you've seen Patient Worthy's article about Spoon Theory, maybe you've sent the Spoon Theory to friends or relatives, maybe you started using the term "spoonie" before you even really…
For 21-year-old Tanner Pyeatt, the future is uncertain. Diagnosed with Duchenne muscular dystrophy at the age of four, he gradually lost the use of his legs and has been wheelchair-bound since age nine.…
Parker Wade is more than a cystinosis patient; he’s a Buckaroo, too! “Mothers of Buckaroos,” a Texas organization, banded together to raise funds for Wade, who received an expensive kidney…
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…
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