New to CysticFibrosis.com

  Who are we? We are patients, families, friends, medical professionals and industry experts from all over the world, sharing our experiences with CF, and offering support, education and hope for the future. Our History CysticFibrosis.com was founded in 1996 at the dawn of the Internet and the rise of …

FinancialLiving With CFResources

A Conversation on Filing Taxes with Cystic Fibrosis

CF Tax Deductions Often people with Cystic Fibrosis and families with children with Cystic Fibrosis are not aware of the tax deductions they may be able to make to help offset the costs of the condition. Watch the videos and learn more….

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 …

AdheranceLiving With CFParentingSupport

Parenting Tips

Lisa Greene is a writer, educator and mother of two children with CF. She and child psychiatrist Dr. Foster Cline wrote a book about parenting children with health issues. The book can be found here, and this is her website www.TipsForCFParents.com Below is an article about five crucial concepts that …


Join the Community

WHY JOIN US?  CysticFibrosis.com supports the largest and oldest global Cystic Fibrosis community on the web, founded in 1996, comprising patients, caregivers, healthcare professionals and industry service providers We believe in harnessing the knowledge of the patient and caregiver community to achieve participatory healthcare. Our CF community holds a wealth …

AdheranceLiving With CF

Ten Hurdles to Cystic Fibrosis Patient Adherence

By Jeanne Barnett on Jun 4, 2012 (source: EyeforPharma Blog) There are many factors which can influence the level of patient adherence in any given treatment, Jeanne Barnett looks at how social platforms can provide the answers and presents her findings. You may already be aware of the great success …

Living With CFResearchTechnology

Personal Spirometry and the Cystic Fibrosis Patient

Written by Jeanne Barnett As a moderator/founder of a vibrant online social health community: cysticfibrosis.com, I can attest to hundreds of messages in which cystic fibrosis e-patients discuss their PFTs (pulmonary function tests). Members are so in tune with these numbers, they often add them to their signatures along with …

GeneticsLiving With CFResearch

Cystic Fibrosis genetics: Know Your CF Mutations

Source: CFF.org For the first time, drugs are available that treat the underlying cause of the disease in people with certain cystic fibrosis mutations. As new therapies targeting specific mutations of Cystic Fibrosis genetics are developed and become available, it will be increasingly important to know your mutations so you …

FAQsGastrointestinal DiseaseLiving With CF

Enzyme FAQs

Newly Diagnosed/Infancy The doctors want me to give the enzymes to my baby in food but he’s only a week old? I thought we weren’t supposed to give solids that early. My baby nurses by grazing. When do I give more enzymes? I’m supposed to give ½ an enzyme. How …

ExerciseLiving With CFNews & Events

CF Patient To Climb the UK’s Three Highest Mountains in 24 Hours

Written by Leonor Mateus Ferreira Source: Cystic Fibrosis News Today Not long after his birth in 2013, Paul Siebenthal‘s son Noah was diagnosed with cystic fibrosis (CF) and the new father became aware that his son would struggle with a chronic, life-threatening disease for his entire life. However, Paul Siebenthal did not accept that …