Phoenix Richey was living a happy and healthy life until things escalated toward the unexpected. During a tumultuous 24 hour period, a strange allergic reaction spread along 65 percent of…
Those that suffer from Acute Myeloid Leukemia (AML) undergo an arduous chemotherapy process and stem-cell transplant. It doesn't seem to be enough as the American Cancer Society states that only…
Jenn Keeton was a longtime Children's nurse, surrounded by common and rare diseases among the youth. She never thought her own child would be born with one. Her and her…
Residents of Omaha ran together during a 5K and 1K run to raise money for kids with cancer and their families at Lewis and Clark Landing. Hy-Vee and Pinky Swear…
One year old Evan Brenneman will have to live with hunger his entire life. Not because he's homeless or poor, but because Evan was born with Prader-Willi syndrome (PWS). This…
The world of rare disease saw a big win yesterday after a Chinese business man contributed $10M toward a new institute for rare disease. The University of Massachusetts Medical School…
When Dacarri Davis stepped on a piece of glass in the bathroom, he had no idea his life was going to change. Neosporin didn't help the glass cut, because something…
Some doctors make it their life's work to study one disease. Maybe they've been affected or know somebody affected by it, making it a personal endeavor. Dr. Tsz-Kwong (Chris) Man…
A 6-year-old boy from Cincinnati who was battling Stage 4 Neuroblastoma has passed away. His name was Walter Herbert, but he was somewhat of a celebrity in his community known…
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.…
The future is now. A small robot called AV1 will allow a sick boy to experience the classroom from home. When you're diagnosed with a rare disease, it's hard to…
When Zika arrived in Latin America a few years ago, something about it had changed. It was different, more devastating. This was very strange, considering the disease had existed for…
CLICK CLICK! For some, the mundane sound a pen clicking is simply unbearable. You could be an easily peeved person or you are probably suffering from a rare disorder known…
There's a serious, rising issue brewing over health care coverage for Phenylketonuria (PKU) and it's a steaming pile of outrage. If you haven't heard of this rare disease, here's the…
Amber and Ryan Dollinger were preparing for the birth of their second son just as Hurricane Harvey was plowing toward them dead-on. They fled their Beaumont, Texas home and found…
This is the story of Eddie and Sarah Yang, their children, and challenges they face with a rare disease called congenital central hypoventilation syndrome (CCHS). Eddie and Sarah married in…
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…
Dealing with a tragedy such as a brain tumor poses a great challenge to relationships. In this rare occurrence, a young couple from England were both diagnosed with a brain…
In Hartford Connecticut, 12-year-old Emma Becker has been fighting the brave fight against cancer for the last four years. Her condition: Neurofibromatosis, a condition that causes growths of tumors to…
It's called Hereditary multiple exostoses (HME). Yes, quite the mouthful. Our friendly neighborhood scientists at Children's Hospital of Philly (CHOP) have been working diligently to study this rare bone disease…
Neuroblastoma has been one of those rare diseases that affects the youth and nobody messes with our future generation! This form of cancer weasels its way and burrows deep in…
Zika! It was the talk of the town during 2015-16 and has thus quieted down, but the virus still lingers and scientists are still working to combat it. A quick…
Care to be inspired today? There's a group of inspirational world-changers named SpringWorks Therapeutics. These pioneers are on a mission to unite scientists, biopharmaceutical partners, patient groups and philanthropists to…
Des Moines news anchor, Elizabeth Klinge, is receiving quite the social media buzz after posting heart-warming photos of her daughter Hanalay and her notable port-wine stain. The photos garnered a…
What would you do if your child was born with a rare neurological disease? So was the case for a small town boy. In Orangeville, Ontario, Ryder Ouderkirk lives with…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
