AdheranceLiving With CF

Cure-E-Us…Cystic Fibrosis 2018!

Cure-E-Us! Strange as it may seem in this time of healthcare anxiety, and a period of sustained political transformation during which our ways of seeing the world, understanding and caring for ourselves physically, mentally, and spiritually are being challenged, we may see this as an opportunity to future cast. Indeed, …

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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 info@cysticfibrosis.com 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 …

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Living With CFResearchSurvey

Survey of Cystic Fibrosis 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 Cystic Fibrosis. 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%) …

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FAQsFinancialLiving With CFSurvey

Financial: Your Questions from the 2015 Survey

Your Financial Questions From Our Survey in April 2015   How can you lower our out of pocket expenses in medications? Where else can we find financial help for the high cost of copays? Where can I get help with expenses? The high cost of medicines and machines need to …

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AdheranceFAQsLiving With CF

YOUR DATA! Your Questions on Self Management

Here are your questions on Self Management from our Survey last Spring What paperwork should I keep or throw away? More up to date convenient equipment Easiest ways to clean a nebulizer? How can I learn more about the various nebulizer on the market, and which are best? How much …

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Living With CFSurvey

Cystic Fibrosis Resource and Information Needs Survey

Written by Melissa75 and Imogene In the Spring of 2015, we surveyed the CF community on resource and information needs. 478 people responded, answering questions about the resources for CF care they most believe could improve their CF care, and what topics they’re most interested in learning about. We’d like …

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