Distinguishing Relapse from Reinfection in MAC
MAC is a non-tuberculosis mycobacterium (NTM). It is found everywhere in the environment, and since the 1990s has been increasingly […]
Rare Disease Patient Advocacy Summit
Later this week, Jeanne Barnett will be attending the fifth annual RARE Patient Advocacy Summit run by Global Genes in […]
How Much Do Orphan Drugs Cost?
The high cost of CFTR correctors and potentiators has been in the news since the drugs were approved by the […]
Survey Shows A Lot of People Save Leftover Painkillers
More than half of patients who get a prescription for opioid painkillers have leftover pills and keep them to use […]
Med-IQ: Creating a Partnership for Adherence in Cystic Fibrosis treatment
We were recently contacted by Med-IQ, a company that educates CF medical professionals and patients and caregivers. We looked at […]
13 year-old with Cystic Fibrosis is a Top Surfer in South Carolina
A thirteen-year-old with CF, Bree Labiak, is a top surfer in South Carolina. She competes with and sometimes wins over […]
A New Tool for Cystic Fibrosis Lung Monitoring
Ultrashort Echo-Time MRI has been shown in a recent study, published last week in the Annals of the American Thoracic […]
Organ Donation – Surprising Facts
Cystic Fibrosis patients make up 12 percent of the waiting list for lungs. New York State changed the legal age […]
First Winner! Probiotic/Prebiotic Recipe Contest (Cystic Fibrosis diet)
This recipe and picture were submitted by cysticfibrosis.com member haimapatel. She is the first winner of the Probiotic/Prebiotic Recipe Contest […]
Drug Development Pipeline for Cystic Fibrosis treatment
The CFF has a interesting and easy to use Drug Development Pipeline webpage which shows the stages of medication that […]