vertex
FinancialLiving With CFTreatments

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 Vertex Pharmaceuticals. Keeping’s son, Eli, has cystic fibrosis, and she’s not happy that Vertex’s two-drug combo, Orkambi, costs $259,000 a year. So Keeping, who gathered more than 124,700 signatures on …

READ MORE →
lungs-37825_640
Living With CFTechnologyTransplants

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 different. Lungs are explanted, evaluated, and shipped as quickly as possible to our specialized EVLP facility. The EVLP team works around the clock to assess the lungs, share data with …

READ MORE →
organmap
Living With CFResourcesTransplants

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 in Cystic Fibrosis. Lots of great information in The Scientific Registry of Transplant Recipients (SRTR) The registry supports ongoing evaluation of the status of solid organ transplantation in the United …

READ MORE →
globalgenes
GeneticsLiving With CFNews & EventsVideo

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 Huntington Beach, California. The goal of this year’s RARE Patient Advocacy Summit is for patients, caregivers, and advocates to walk away equipped with actionable next steps whether you have been …

READ MORE →
pillsfuturicity
Living With CFSurveyTreatments

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 later, a practice that could potentially exacerbate the United States’ epidemic of painkiller addiction and overdoses. Researchers reporting in JAMA Internal Medicine also found that nearly half of those surveyed …

READ MORE →
mediq
AdheranceLiving With CFSupportTechnology

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 their resources and felt the community here at cysticfibrosis.com might be interested in learning more from them. Med-IQ’s mission is “To deliver education that brings measurable change in healthcare professional …

READ MORE →
CRopDNA
Clinical TrialsGeneticsLiving With CF

CRISPR Finds Mutated DNA and Is Okayed for Clinical Trial

Since 2003, when we first started saving all our messages here at CysticFibrosis.com, Cystic Fibrosis genetics and our mutations have always been a hot topic. At first, we didn’t even know our genetics could be tested, because the sweat test was the gold standard for diagnosis. Then came Ambry Genetics. …

READ MORE →
Survey teens
Living With CFSurveyTeens

Survey Filled – Thank you!

Dear CF Community Members, This survey is FILLED. Thank you for your interest and/or participation. Please email [email protected] if you would like to be considered for future projects. Thank You!   As a valued member of the cystic fibrosis community, we are inviting teens to make their voices heard in …

READ MORE →
vendanta
Gastrointestinal DiseaseLiving With CFTreatments

Bugs into Drugs: Beyond Fecal Transplants

Read about the drug company: Vedanta “Vedanta is a little different. It focuses on isolating specific bacterial strains that scientists believe can have a specific biological effect, and making those into “rationally defined” drugs. That’s different than a fecal transplant, in which physicians take feces loaded with incredibly diverse bacteria …

READ MORE →
gold_cage_1600-1400x400
GeneticsLiving With CFTreatments

DNA ‘cages’ deliver drugs with zap of light

Very interesting article relating to drug delivery via ‘dna cages’. Getting drugs to go just where you want them inside the human body is no easy task, and using high doses of chemicals that are carried by the bloodstream to the wrong tissues or organs can lead to toxic side …

READ MORE →