It's Fall "Y'all"! This week, we have PW Contribution from a man with CMT. We also have one on raising a child with rare disease. We also have good news…
Welcome back Patient Worthians! We are back this week from the 2017 Global Genes Rare Advocacy Summit. Did you attend? If so, what did you learn? Let us know here. This…
In Ancient Greece, you had to be part divine to be called a hero. Achilles' mother was Thetis, a rather minor goddess. Heracles’ father was a god you might have…
Recently, in a new BBC documentary, a new innovative device was featured that offers a unique and engaging way for people with cystic fibrosis to handle one of the challenges…
The Cystic Fibrosis Foundation (CFF) is hosting the North American Cystic Fibrosis Conference (NACFC) in Indianapolis, Indiana. The CFF is an amazing non-profit that aims to cure cystic fibrosis while…
Great Strides, hosted by the Cystic Fibrosis Foundation (CF Foundation) is the largest national fundraising event for cystic fibrosis. Over 125,000 people a year lace up their walking shoes to…
The clock is ticking to sign up for this big conference! Thousands are expected to flood the convention halls at the North American Cystic Fibrosis Conference (NACFC) this November. Indianapolis,…
You know the best thing about a 3-day weekend? A 4-day work-week! We hope you had a fun and safe Labor Day Weekend here in the states. How do you…
I sat behind Bobby in Basic Algebra class, room 17. We were both 15 years old. Each day of class, we’d manage a polite “Hey.” Then one day he wasn’t…
On September 28th, 2017 at 9 PM EST, a new online, mindfulness-based, stress reduction course will be given by none other than the extraordinary Julie Desch, MD. She is a physician…
Happy Labor Day Weekend! It is our hope that all of our readers are safe and sound with family this weekend. Given the tragic hurricane flooding in Texas (and India)…
Tammy Grover is a mama bear in every sense of the word. She keeps her cubs close and has dedicated her life to trying to help them survive. Two of…
With the creation of a new hearing test, researchers in the United Kingdom may be one step closer to diagnosing early hearing loss in young patients with cystic fibrosis (CF),…
Since my son was old enough to hold a video gaming system, he's been hooked. They're fun, challenging, and (sometimes) educational. I tell myself that video games may help improve…
Why is there a growing trend of adults receiving care from pediatric doctors? Meet Rachael Goldring. She is a vibrant 24-year-old who has just spent her first year since birth…
When I was a kid, my parents had one TV. It was a 19" black and white set with a rabbit ear antenna that only picked up two networks (when…
Happy Back-to-School Week Patient Worthians! If you're going back to school or your children are going back to school, we know it's a hectic and fun time of year. So…
When I was a kid, pedal power was the way to go. In fact, it was the only way to go—anywhere. It was a mode of transportation for us. We…
According the Cystic Fibrosis News Today, when Claire was first born, she was only expected to live to the age of 10. Then Claire’s life expectancy lengthened to 18, and…
The concept of “race” occupies a perilous crossroads at this moment in American history. Some would argue that we live in a “post-racial” world since the election and re-election of…
In a study at the University of North Carolina (Chapel Hill), researchers found that there may be a much more effective new way to isolate lung stem cells in order…
A North Carolina-based research group has just developed research that indicates a potential stem cell treatment for lung fibrosis conditions such as cystic fibrosis (CF) and idiopathic pulmonary fibrosis (IPF).…
Your hear that? It's the sound of the future knocking on the door! The MIT Technology Review reports about the first-known experiment to edit human embryos in the United States using a…
Happy Friday! This week, we have a story that might break your heart about a woman who battled cystic fibrosis. But we also have a story that might inspire you about a…
Most things have multiple functions. The tire iron you use to jack up the car when changing a flat tire? It can be used as a self-defense weapon if an…
© Copyright 2024 Patient Worthy
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.
