“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…
Leí un artículo recientemente por Andrew Smith que me ha desconcertado, no por él, sino más bien los hechos alarmantes que discutí acerca de las personas con fibrosis quística (FQ)…
Nosotros aqui en PatientWorthy siempre estamos en la busqueda de nuevas manera para hacer mas facil la vida con una enfermedad cronica. Nos dimos cuenta sobre esta nueva tecnologia que podria ser como…
¿Y ahora qué? Llegaste al doctor para hacerte un chequeo y sales con un diagnostico que cambia tu vida entera. Sea, Distonía, Acromegalia, Angioedema Hereditario (AEH) o la enfermedad de…
CysticLife.org, una red en línea para la comunidad de la fibrosis quística (FQ), se está embarcando en un esfuerzo de recaudación de fondos para apoyar la investigación histórica impulsado por…
Oh Canadá, la gente piensa que eres todo "por favor y gracias", y el jarabe de arce, pero conozco la verdad: Eres un luchador y esa lucha es más evidente…
PatientWorthy está asociando con CysticLife.org para poner de relieve algunos de los miembros en su increíble comunidad! CysticLife.org surgió de un blog iniciado por paciente con FQ, Ronnie Sharpe, para…
Podría ser una historia de una novela de espías: Si bien se están pasando mensajes codificados, un extraño intenta infiltrarse e interrumpir la comunicación. Parte de la misión involucra el…
Alguna vez has tenido uno de esos días en los que simplemente no se sentía muy entusiasmado acerca de su vida? Tú sabes de qué estoy hablando. Los blues de…
En el sitio web fabuloso de Cystic Fibrosis Lifestyle Foundation, el blogger de FQ Brian Callanan ha emitido una llamada a la acción. Él quiere saber de todos ustedes si…
Bueno, la gente en la Comunidad de la fibrosis quística, escuchen! Un nuevo tratamiento dirigido para la fibrosis quística (FQ) puede estar en el horizonte antes vs después, y estoy…
No tengo ninguna experiencia que viven con fibrosis quística o entiendo lo que se siente al pasar por el régimen diario. Yo sé lo que se siente al dar atención…
My mom is a big believer in trying things. She never wanted her kids sitting still, so when we weren’t being unceremoniously pushed outside to hang out with neighbors, we were…
"Sticks and stones may break my bones But words will never hurt me" Despite the fact that most of us grew up reciting this old adage, by the time we're adults…
Last year, the FDA approved a record number of new drugs to treat rare diseases, according to the National Organization for Rare Disorders (NORD). In all, 21 "orphan" drugs were…
Seventeen-year-old, Brooke, diagnosed with cystic fibrosis (CF), had only one wish. Inspired by Kevin Durant and his Aunt Pearl shoes designed for cancer awareness, Brooke told the Make-A-Foundation she wanted…
What strikes me about artist, David Mortimer's, exhibition is his use of "glitter." "[Glitter] is a symbol of my life in a way. It's about trying to cover up, glamorize,…
CYSTIC FIBROSIS PATIENTS VOTE FOR ALTERNATIVES TO TRADITIONAL TREATMENT CysticLife partners with researchers at Mayo Clinic to study if exercise can replace therapy 1x per day Phoenix, AZ: Fed…
Read Part 1 of this hot debate here! A huge body of research agrees with these findings. However, the exact “medicinal” value we can place on physical activity is not…
An article posted on the Cystic Fibrosis News Today site, piqued my interest about what’s happening in the world of cystic fibrosis, or CF, lung transplantation these days. According to the Cystic…
For individuals with cystic fibrosis (CF) who know by personal experience the benefits of exercise in treating their condition, Courtney Wheatley, Ph.D. agrees with you and is working to demonstrate…
A college class in solo performance, taken during his senior year, changed Brennen Reeve’s life. Why? It was the first time the now 24-year-old ever really shared his experiences with cystic…
The Estevan Kinette's Club requests the pleasure of your company at their inaugural Princess Ball at the Beefeater Plaza in Estevan on January 16th. Please come expecting to dance,…
Traveling can be exhilarating. Exploring different locations, learning to appreciate how others live, and challenging your own perceptions. You can get this experience just from traveling throughout the US! But traveling…
We at PatientWorthy are always on the lookout for ways to make living with a chronic illness easier. And we’ve heard about new technology that might just be a godsend…
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