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…
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…
Happy August Patient Worthy Peeps! This week, we have some awesome posts to keep you up-to-date on some of the latest rare disease developments. There's news on a hopeful possible…
Major breakthrough alert! Scientists have developed a method to test the sweat of infants to detect cystic fibrosis (CF). CF is an inherited disorder that causes severe damage to the…
In the mid-1990s, many in the United States were first exposed to the somewhat strange juxtaposition of choreographed leg flailing and still upper bodies. This was, of course, Riverdance. This…
There's a lot happening in the cystic fibrosis world, so here's the latest scoop. Cystic fibrosis (CF) is a genetic disease that causes progressive and constant lung infections as well as…
There is nothing worse than a summer cold. I should know. I am the proud owner of a bonafide summer cold complete with a runny nose, sore throat, coughing fits,…
Welcome Back to Editor's Choice! The end of the week is finally here, and we have some reading material for you. First, we have an awesome story of a CF…
Edgar Allan Poe’s idea of perfect beauty is frequently associated with living life to its fullest in a short period of time and dying young. Lenore, from his most famous…
Mermaids have unique breathing concerns while they’re on land. In Disney’s “The Little Mermaid,” a young mermaid princess trades her voice for an opportunity to live on the land and…
When you think of an inspiring athlete, who comes to mind? Jesse Owens, who went to the 1936 Olympics held in Nazi-controlled Germany and proceeded to win four gold medals…
The phrase “take advantage” is a bit strange. It can be quite innocuous with regards to using something. For example, there is nothing too bad about saying, “I’m going to…
Earlier this month, Vertex Pharmaceuticals released big news regarding a new development in cystic fibrosis treatment. The pharmaceutical company announced that their new, innovative technique in treating the disease had…
Happy Friday! How's the the sweltering heat treating you all (if you're on the east coast of the US, that is)? Hoping you are keeping cool! In the meantime, check out…
So much of it “comes down to morals.” A couple struggling with cystic fibrosis may have up to a 50% chance of passing the gene on to their child if…
Regular readers of Patient Worthy know the cost of drugs is a huge barrier to treatment for many patients and families. Additionally, the fewer people diagnosed with a condition, the…
3:15 a.m.? Are you kidding? Why am I awake and staring at a digital clock that says it’s 3:15 a.m.? Ever have a night like that? The more you get…
When you’re a preteen, fitting in (or at least, not standing out) can be a big part of life. Sometimes, you’re just trying to get along with schoolmates, teachers, and…
Happy Independence Day Weekend Everyone! We have the latest update on the UK cystic fibrosis fight for Orkambi. We also have a great contribution on the importance of taking care…
Cystic Fibrosis… For a mother, those words are disheartening, confusing, and so, so frightening. For a child, those words mean countless daily medications, extensive hospital visits, and a shortened life…
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.
