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…
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…
Race and ethnicity is a touchy subject—and rightfully so—but that doesn’t mean it shouldn’t be discussed, especially in terms of healthcare. The fact is, certain genetic diseases pop up in…
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…
Press release - 10th July 2016 PW Partner: Breathe With Me, Strawfie Challenge When Danielle Cartwright filmed her daughter Talia May taking her medication and proudly posted the video online,…
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…
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…
Happy Friday Patient Worthians! Just because Cystic Fibrosis and Lyme Disease Awareness Month is over, doesn't mean we won't stop fighting the good fight for spreading awareness about these diseases! We…
Bearing both common missense mutations ΔF508 and G551D, Briauna was diagnosed with Cystic Fibrosis (CF) as a 10 month old baby. As a child living and growing up with CF,…
Like all genetic disorders, there aren’t many silver linings to having cystic fibrosis. The best we can say is that life expectancy for people with CF has improved thanks to…
With apologies to the website of the same name, I effing LOVE science. I can’t do science but I love how it’s so incredibly complex that it regularly romps right…
De acuerdo con la Fundación de Fibrosis Quística, cerca de 30.000 personas viven con FQ en los EE.UU. y casi 1.000 nuevos casos son diagnosticados cada año. La fibrosis quística…
Hello Again Patient Worthians! This week we are highlighting part TWO of a story about a man with cystic fibrosis, racing for his non-profit RaceCF and to spread awareness of exercise therapy…
Si alguna vez hubo una "girl next door", Ashley Coleman seria la manifestacion de esta idea, una mujer joven y bella, de ojos brillantes, rubia y muy activa! Ella tiene…
Ayer leí un artículo publicado en la fibrosis quística Noticias Hoy por Patricia Silva, PhD, que fue causante de mucha reflexión. Los científicos han descubierto que hay una comunidad compartida…
Happy Friday Patient Worthians! This week we are highlighting a story of a man with cystic fibrosis, racing to breathe and spread awareness of exercise therapy for those with CF.…
“We all get along and race together. The family life, the company, the team, the social life, we are very much in this together.” – Manny Goguen Manny Goguen, a…
“My biggest passion in life right now is our team and just trying to help those with CF to be active.”- Manny Goguen Twenty-four-year-old Manny Goguen, a man living with…
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