patient assistance controversy
AdvocacyFinancialLiving With CFTreatments

Understanding Pharma Controversies in the News

Many people have heard of the company, Turing Pharmaceuticals, which last year raised the price of a drug by over 5,000%, but most people don’t understand how and why that was possible. Looking at the issues behind the Turing Pharmaceutical controversy of this past year is worthwhile even though the …

Living With CFRespiratory DiseaseTechnology

SpiroCall: Lung Function Measured by Phone

Computer scientists and engineers at the University of Washington have developing SpiroCall, a tool that can measure lung function through a phone – any phone – including smartphones, flip-phones, landlines or payphones. From the article in Scientific News Today: A paper to be presented in May at the Association for …

FAQsLiving With CFTransplants

Lung Transplant Facts

Lung transplantation is something a person with CF might consider late in the progression of the disease, when life expectancy is about 1-2 more years and quality of life is severely compromised. Here are some numerical facts about lung transplants. The number of reported lung transplant surgeries worldwide has more …

FinancialJoinLiving With CFSupport

Happy Mother’s Day – Please Donate! is a non-profit parent to, your CF community website. In order to keep this valuable resource alive and kicking, your donations are urgently needed. It just takes a few minutes to donate $5, $15, $25, $50, even $100, or whatever you can afford to ensure the continued presence …

Cystic Sisters
Living With CFParentingTransplantsVideo

Documentary: My Perfect Family, Cystic Sisters

Olivia Shivas from Attitude Pictures in New Zealand wrote to about a documentary series her organization has created that explores the lives of people living with serious health conditions and disabilities. One of their documentaries is about two sisters, Kristie and Nikki, who are young moms with cystic fibrosis. …

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DiagnosisFAQsGeneticsLiving With CF

Genetic and Rare Diseases Information Center

The National Institutes of Health (NIH) publishes up-to-date information about testing for cystic fibrosis on its Genetic and Rare Disease Information Center webpage (GARD). This is their FAQ about testing and resources. It discusses what situations warrant genetic testing, what tests are available and how much they cost, and how …

Living With CFResearchSurvey

Survey of CF Patients by GeneFo

As reported on the website Cystic Fibrosis News Today, GeneFo, the online platform for organizing different chronic disease communities, surveyed 2,400 people with CF. The questions they asked included: How are you feeling today? Depressed (39%) and Tired (34%) were top answers. What is your preferred calorie booster? Meat (37%) …

depression 2
Living With CFResearchSupport

The Importance of Treating Depression in People with CF

Depression can be a difficult subject to talk about, but it is important to be aware of the increased prevalence of depression in people with cystic fibrosis and other chronic¬†health conditions, and to try to understand how depression, physical health, and general well-being are interrelated. In 2007, five doctors and …

xbox kinect
Living With CFRespiratory DiseaseTechnology

Xbox Kinect to Monitor Lung Function

Researchers in the UK are developing technology for enhanced spirometry with 3-D imaging using four Microsoft Xbox Kinect devices. This technology assesses lung function and chest wall movement, and might also be useful in testing medication efficacy and changes in respiration during exercise. From the article in Forbes magazine: In …

FAQsFinancialLiving With CFSupport

Social Security Disability Benefits for people with Cystic Fibrosis

Introducing Deanna Power, the Director of Community Outreach for Social Security Disability Help. She wrote this article for our community at to help shed light on the subject of applying for disability benefits. ¬† Applying for Disability Benefits with Cystic Fibrosis     by Deanna Power   Cystic fibrosis …