According to a story from the National Organization for Rare Disorders, patient advocacy organizations are joining forces to send letters to Medicaid directors across the USA to advocate for the…
The Imperial College of London recently began development of a body suit to improve treatment of Duchenne muscular dystrophy. The suit uses a unique artificial intelligence interface to collect and…
While Miguel Cervantes stunned everyone during his Alexander Hamilton audition in Chicago, he couldn't help but think of his baby girl. She had just been hospitalized for something unknown at…
No couple wishes for a high risk pregnancy and a premature birth. But according to a story on The Today Show's website, new mother, Mallory Brinson, was grateful for…
Madrigal Pharmaceuticals recently brought a new familial hypercholesterolemia drug to clinical endpoint. The drug is currently being tested as MGL-3196. Here's what you need to know about the new drug.…
According to an article from Times-Call Regional News, a seven year old girl named Mila Makovec has just begun an experimental treatment for Batten disease. Originally from Boulder County, Colorado,…
A new study has revealed several complications of a multiple sclerosis treatment. The studies illuminate difficulties surrounding a powerful drug treatment and potential pregnancies. Keep reading to learn more about the…
Alondra, a 14-year-old freshman in high school weighs only 65 pounds. This is a seemingly easy giveaway that she was sick, but initially the weight loss was attributed to her…
According to a story from BBC, a former employer is paying for a woman's cancer treatment. 74 year old Pamela Stubberfield of Oxfordshire was diagnosed with mesothelioma. More than 80…
Perhaps it is because parents often feel dissatisfied with the results they receive for their children through traditional medicine that they sometimes look elsewhere for treatments to improve the conditions…
Creative parenting. I find such inspiration when I hear about parents digging deep to adapt surroundings (or life) so their kids can deal with it better. A WBTV social media…
My name is Alan. I cross many borders as a person with a rare disease. These borders are physical, geographical and psychological. Crossing so many borders has earned me the…
I have lived with chronic pain from a neurological movement disorder called dystonia for nearly 20 years. It reminds me of the bully who picks on kids in the schoolyard…
Ovarian cancer diagnosis is extremely rare in women under the age of 20, yet Kronenwetter teenager, Khiana Bradsaw, was diagnosed at the young age of 13-years-old, reports ABC 9 News…
According to a story from Newswise, a recent study shows that Merkel cell carcinoma, which historically has affected only a few thousand people per year, is becoming more prevalent, especially…
Tomorrow is Rare Disease Day! There are 7,000 rare diseases and disorders that affect about 30 million Americans. Three hundred million worldwide are affected by rare diseases and 95% of those…
Meisyn Ellison, a 13-year-old in Utah, adopted from China, battles the debilitating effects of her rare disease and now seeks to find her biological parents in hopes to give doctors…
Jahkee Johnson, a 16-year-old from Cedar Grove High School, is exceptional and accomplished for many reasons, beyond the fact that he tackles challenges and goal without the help of legs,…
Pompe disease affects roughly one person in every 40,000. One form of the disease specifically develops within the first months of birth, or early on in childhood. Now, the first…
As an official Friend of Rare Disease Week, we are highlighting some of our heroes and rare disease warriors' stories. Below was submitted by the ADNP Kids Research Foundation and…
According to a story from the International Business Times, researchers have successfully grown kidney tissue that can filter and produce urine within a living organism. This has the potential to…
You'd be excused if many (or even most) of you have never heard of this rare disease - which is why it's important to observe rare disease awareness months. Marfan…
CNN published this incredibly story about love and bravery earlier this month - and it's worth a second look. Sophia Weaver was born with deformities to her hands, feet, and…
According to an article from The Huddersfield Daily Examiner, Isla Sykes was diagnosed with mucopolysaccharidosis (MPS III), otherwise known as Sanfilippo syndrome, at age four. Her uncle Ryan Townrow, is…
According to a story from the Washington University School of Medicine in St Louis, scientists from the university used a sample of skin cells from diseased patients and transformed them…
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