PatientWorthy se ha unido a CysticLife.org para poner de relieve algunos de los miembros de su comunidad increíble! CysticLife.org surgió de un blog iniciado por CF paciente, Ronnie Sharpe, para…
Vamos a volar su mente durante un minuto. Hay aproximadamente 7.000 diferentes tipos de enfermedades raras, y más se descubren todos los días. De acuerdo con genes globales, hay 30…
Alguna vez has tenido uno de esos días en los que no se sentía muy entusiasmado acerca de su vida? Tú sabes de qué estoy hablando. Los blues de ho-hum.…
When faced with the unexpected, we often are overwhelmed with fear about of what lies ahead. If you or a loved one have dealt with a devastating medical diagnosis, many…
How many of us are guilty of spending countless hours just scrolling through Facebook? I know I'm guilty of that. Just checking out pictures and watching videos. It's great to see…
This community has come together in a big way to support a local family. Eric Frisbee and his wife, Julie, have two daughters that are living with cystic fibrosis. They…
When an arthritis medication can bring hope to so many more... Cystic fibrosis is a disease that affects the respiratory system and also the gastrointestinal system. There are 2 certain inflammasomes, called…
Happy Post-USA Election Day Friends! TGIF Patient Worthians, am I right?! Hopefully this weekend is full of rest, relaxation and positivity! Maybe just avoid social media for a while and hang…
Parents and guardians of a child with chronic illness have it very hard, much harder than most people understand. Listening and reading your stories, I have come to understand that…
Sometimes when a person has to fight the daily battles with chronic disease, some things just don't seem as important as others. Occasionally, patients with chronic disease are understandably focused…
What do you think of when you hear "diabetes"? I always think of lots of sugar, soda and candy. Diabetes can really affect anyone's life, as I learned recently from…
I have been living with Cystic Fibrosis (CF) since birth. I was lucky that I was diagnosed early and started on medicine straight away. One in every 25 people carry the…
People mostly know that cystic fibrosis (CF) causes issues with the lungs—to the point of breathing difficulty. Contrary to common assumptions, cystic fibrosis also affects the pancreas, making it difficult…
“In the pipeline” are words that make the heartstrings of anyone living with a chronic, hard-to-treat disease go twanggggg. It’s Big Pharma lingo for “drugs under development,” and generally signals…
Press release: 12th October 2016 Abigail Brundrett, 16 and Cassidy Vancil, 18 from Charlotte, NC, have choreographed and performed a dance video [to help her lifelong friends]. [It] highlights the struggle faced by people…
Happy Fall Friday Patient Worthians! This week we have the amazing story about a woman with dystonia. We also have a video review of a man diagnosed with CVID. Additionally,…
Living with cystic fibrosis(CF) can change everything. When you hear that someone, whom you love deeply, has been diagnosed with something that is incurable your life changes dramatically. When reading…
Kudos to the Cystic Fibrosis (CF) Foundation for building a mighty network of care centers for CF patients all across this great nation of ours! The Foundation has set forth…
What do you think of when you hear "cystic fibrosis"? Well, if you know what it is, probably nothing good. If you don't know about cystic fibrosis and you've clicked…
Press release: 6th September 2016 Raise awareness about your cystic fibrosis issues on Worldwide CF Day Since 2013 many countries have marked Worldwide CF Day on the 8th September. As this…
Welcome to this week's Editor's Choice! Dysautonomia is misunderstood and neglected. This week we have two posts that could help you deal with this condition. We also have a heartwarming…
Picture this: You walk into a lab and find these slimy-looking, colorful blobs sitting in petri dishes. You get closer. Closer. The blobs take shape; they are livers, kidneys, and…
Happy Father's Day Week Patient Worthians! We hope you celebrated your rare dads this week-- because they deserve it. As you know, it's Myasthenia Gravis Awareness Month so we are highlighting some new drug…
We are halfway through 2016 and we want to thank you Patient Worthians, old and new, for reading, sharing your stories, and supporting our patient contributors and writers! As a…
As featured in this Strawfie Challenge press release last week, two Ohio twins Aleeya and Alani are seeking to spread awareness of cystic fibrosis and the harsh realities of living…
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.
