According to a story from CTV News, Triss Hunter is a junior at Ecole Mission Senior Secondary School in the Fraser Valley. This year, she is not being permitted to…
Jordy Cernik isn't afraid of anything. It's not that he has some kind of super ability that makes him fearless or special secret agent training that defies normal reactions to…
In Cincinnati, there are two children, Taryn and King Walker. They are 13 and 11 years old respectively. Taryn and King are excellent students and attend the School for Creative…
Whenever a rare disease family is in crisis, which happens all too frequently, the request for prayers goes out to others, knowing that the response will bring about comfort. Rare…
Dear UK businesses and decision makers within them, I know it’s mental health awareness week but for my benefit could you for just a couple of minutes focus on the…
According to a story from the Leamington Observer, four-year-old George Young's first words were 'mama' and 'papa,' but he did not know how to say them for very long. George's…
When I was pregnant with my second child, I knew it would be different. We had all the essentials from having my daughter a few years earlier, and advice from…
Ever since I was little I have always loved the thought of Mother’s Day. My mom has always been a hero in my mind. I remember thinking to myself, “She…
According to a story from The Tennessean, mother Melissa Hogan has been inspired by her son Case's Hunter syndrome to start a nonprofit organization called Project Alive. The primary purpose…
No one should outlive their child. Losing two children to the same rare disease is a pain that most parents can never understand and hopefully never will. According to a…
According to a story from Newshub, Freda Evans learned early on that there were no treatments covered under the New Zealand health care system to treat her Pompe disease. Freda…
According to a story from blackpoolgazette.co.uk, the NHS has decided to postpone a decision to approve a drug for the treatment of Batten disease. This illness, which is fatal is…
According to a story from the Yorkshire Evening Post, five-year-old Toby Nye, from Leeds, has been seeing significant benefit from an antibody therapy treatment for his neuroblastoma. The therapy is…
The hashtag #hotpersoninawheelchair went viral after the Youtuber and activist Annie Segarra used it as a response to an offensive tweet by Ken Jennings, reports The Guardian. Jennings, best known…
According to a story from wlwt.com, thirteen-year-old Diego Ramirez has been crossing the finish line at the Flying Pig Marathon for seven years, and he recently completed the finish again…
I have always had a gusto for life. Big dreams. Grand ideas. Strong and independent with a will to fight for what I want. And while I’ve had my share…
My name is Stephanie. I am Tristan's older sister and a Registered Nurse. I spend a lot of time with him as he requires nursing care around the clock. I…
26-year-old Ilka Brühl of Germany was born with ectodermal dysplasia, a group of genetic disorders that involve a facial cleft and overgrown airways, defects of the hair, nails, teeth, skin and…
As a society, we're always watching SOMETHING. Television, smartphones, tablets, smart watches, computers - we're always glued to some form of media, so it's always nice when the people we…
This blog post was originally published on the KIF1A blog. We are republishing it here on Patient Worthy with permission. I was recently asked if I was confident that a…
According to a story from the Chillicothe Gazette, twelve-year-old Brooke Hopkins has already had to face chronic inflammatory demyelinating polyneuropathy and a devastating injury in her young life. However, through…
According to a story from the Chicago Tribune, Maine South High School, located in the Chicago suburb of Park Ridge, Illinois, raised over $60,000 for Huntington's disease research. The school…
According to a story from Newsday, a young girl with osteosarcoma named Amelia Eldred had a portion of her left leg amputated, the central section of the leg removed, and…
According to a story from Rare Revolution Magazine, Georgia Hart was first diagnosed with Friedrich's ataxia when she was 15 years old. Since then, living with this rare disease has…
Kelsey is a unique child. Her story still doesn’t have an end or an answer. Only suggestions. Maybe mitochondrial disease. Brain atrophy. The two could even be connected. Kelsey’s parents…
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