Bradley Lowery won the hearts of many as a football mascot. After an ongoing battle with neuroblastoma, he lost his life earlier this year. Neuroblastoma is a rare form of…
Press Release: Lend Your Voice to the Fight to Breathe Faced by the UK’s Cystic Fibrosis Community Cystic fibrosis families from around the UK have joined forces to release a…
Global Genes is one of the world's most prominent rare disease advocacy groups and early next year, they will host the second annual RARE in the SQUARE event. At this…
When you suffer with severe atopic dermatitis you can get pretty desperate to do anything to relieve the itch and other symptoms. So taking a bleach-bath is not out of…
Brielle Manning has been fighting through seizures for over a year, but the dust has settled and her family is now seeing some relief. Brielle suffers from an incredibly rare…
Leukemia is a deadly serial killer that will claim more than 24,500 lives this year, but the Independent Citizens Oversight Committee of the California Institute for Regenerative Medicine (CIRM) just…
The Virginia Newborn Screening Advisory Committee met late last week to determine the fate of Pompe Disease and MPS-1 screening in VA. Before the vote took place, some families spoke…
A teen suffering from a rare disease is receiving some holiday love from kind strangers. When Nathan Kelley started losing his hearing, he knew something was wrong. At first, him…
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…
Six weeks after their daughter was born, a young New Zealand couple had their two children taken away by the state (one was a newborn baby) because of what state…
We all know that an early diagnosis can save lives. But, in an unexpected turn, this mother’s late diagnosis is what saved her son. RareConnect.org details the story of Malinda…
Being a teenager is inherently difficult. There's no real way to make it to your twenties without feeling tired, cranky, and misunderstood by everyone around you. It's even harder when…
A much-lauded piece of wisdom in engineering is that “failures teach more than successes.” While this might seem to contradict itself, I ask you to think back to your own…
If you have a rare disease, chances are, sometimes you feel all alone in your experience. When you look around, there are people all over the world fighting similar battles.…
For people suffering from severe atopic dermatitis (AD), commonly referred to as severe eczema, relief may be in sight, according to a recent article in Dermatology Times. If you're one of…
University of California, San Francisco scientists have developed a new vaccine that treats diffuse intrinsic pontine glioma (DIPG), a rare childhood brain tumor. To learn more about DIPG, click here. Great…
Each year pharmaceutical companies spend millions developing and testing potential treatments. These drugs have to go through many levels of testing to make sure they are safe and effective. And…
The close knit Algiers community in New Orleans united together once again for a charity walk to raise awareness and money for Stevens-Johnson Syndrome (SJS). SJS is a highly rare…
It was a classic story of boy-on-dialysis-waiting-for-a-kidney-transplant meets girl. The year was 1997. Larry Wetsch's kidneys were in dire state, hardening due to a rare disease called glomerulonephritis. Glomerulonephritis happens when…
4-year-old Dimi loves to hang out with other preschoolers his age, play in the park, and ride his bike like a regular kid, but his mother Frances is fearing his…
Whenever I was looking for something I had lost as a kid, my mom would offer the same, unhelpful advice: It'll show up in the last place you look for…
Great news for the rare disease community! Ultragenyx Pharmaceuticals reported back positive results from its phase 3 study of the treatment drug burosumab in adults with X-linked hypophosphatemia (XLH). XLH…
Welcome Back Patient Worthians! This week, we have stories of brave patients and caregivers who run, march, and make innovative steps to reach recovery. A young girl marches after her…
Our gut bacteria may be responsible for antiphospholipid syndrome (APS). What do you need to know about the ordinary gut bacteria known as commensals, and APS? Keep reading, or view…
Rett syndrome is a severe, genetic neurological disorder, which primarily affects girls. While it was once thought to be a form of autism, it's now understood as its own condition.…
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.
