16-year-old Holly LaPrade found her muscle and tendons slowly turning into bone because of a rare disease she had no control over, a news that sent a crushing blow to…
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,…
Helen Edgar, 41, was diagnosed with a rare disease that doctors failed to catch soon enough before her unexpected death. Her family won a settlement of £415,000 in High Court.…
Layne Rodgers is a longtime Astros fan. When he went to the World Series to see his favorite team, he had no way of predicting what would happen next. Just…
Jessica Brown is gearing up to turn 11 years old on December 20th, and her mother, Jemma, is urging people to show her some birthday love. Jessica suffers from neurofibromatosis,…
A rare disease patient is getting the recognition she deserves for her fearless outlook on death and her refusal to submit to affliction. On Sunday, the winners were announced for…
Jessica Gilbert uses her rare neurological disorder as fuel for her creativity. The Converse College student suffers from misophonia, which translates into "the hatred of sound." People who suffer from…
28-year-old Emily Rogers was training for a half marathon in Hamilton a few years ago, when she started having trouble breathing. She never could have predicted what would follow. The…
The National Organization for Rare Disorders has teamed up with Children's National Health System for the Rare Disease Institute. This will be the first center to primarily focus on and…
Three years ago, a rare disease was spawned that made its way into the medical field. Over 100 people gathered in San Diego to research the disease within a new…
According to a new study, getting tested for Zika once is not enough. A second procedure may be needed to avoid giving birth to a child with defects. We all…
Jenna Lowe is an organ donor and social activist and before she died, she created a legacy that would live on in the rare disease community and save lives. She…
Sam and Anna Beiler have not one, but two children with a rare degenerative disease that causes blindness. As of now, there is no treatment. Last month, however, the FDA…
When Anthony Byrd's son, Xavier, was born, something didn't feel right. A closer look at Xaier's face using a heat lamp revealed that something was indeed not right. Following that,…
Sixteen-year-old Ashrai Kumar has endured many nights of tossing and turning in pain due to ulcers caused from Behcet's disease. This chronic condition is seen prominently in Japan, Asia, and…
There's new hope on the rise for multiple myeloma and other forms of cancer. Investigations are underway into a rare disease called NGLY1 deficiency and the clues are looking good.…
In Chicago, a panel of lawmakers and parents are fighting back after the loss of children to a rare disease. Shermane Jenkins lost her two-year-old son to the very rare…
Residents of a small Kansas town united together to post fliers and posters, all to raise awareness about a boy with rare disease. Eleven-year-old Peyton suffers from Xeroderma Pigmentosum (XP).…
A spokesperson for Sarepta Therapeutics announced that their latest drug for the treatment of Duchenne muscular dystrophy is doing very well and is actually helping patients. Duchenne muscular dystrophy (DMD)…
Three-year-old Ben Graham has grown an affinity for all things Police. He gets a thrill from their cars, their dogs and uniforms. But he's been suffering from neuroblastoma since his…
Lily Mason, eight, saw her community uniting in support of her rare disease that only limits her eating to nine safe foods. The disease is called Mast Cell Activation Syndrome…
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…
While other kids his age run amok in the wildness of their Terrible Two's, Lincoln Woodmass remains immobile. No running, no jumping and the possibility of never walking again. You…
Last week, science continued to break boundaries and save lives. In this case, a new gene therapy was used by doctors in Europe to replace the decaying skin of a…
Jodie Davies is no stranger to rare disease. When her daughter Tia was born with a genetic bone development disorder, she never could have expected her next child, Caleb, to…
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