Mom takes on Vertex CEO about pricey Cystic Fibrosis Treatment Drugs
Mom takes on Vertex CEO about pricey Cystic Fibrosis Treatment Drugs
In October, Oklahoma-based journalist and mom Juliana Keeping traveled to Boston with her son to confront Jeffrey Leiden, the CEO of […]
Bluetooth-enabled tech shows promise for adherence in Cystic Fibrosis treatment
A device that monitors inhaled antibiotic use in Cystic Fibrosis treatment, and transmits the information to doctors via Bluetooth technology […]
Lung Bio-engineering Clinical Trial may benefit cystic fibrosis patients
EX VIVO LUNG PERFUSION During an organ transplant, time is of the essence and Ex Vivo Lung Perfusion is no […]
The Bible for Transplants: make data driven decisions about lung transplant
The Scientific Registry of Transplant Recipients (SRTR) helps patients make data driven decisions about their transplant, such as lung transplants […]
Copper in Hospitals to Limit Cross-Infection
The use of copper in hospital rooms, may reduce cross-infection, a common concern in cystic fibrosis centers. Using copper on […]
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 […]