Getting paid for all the work it takes being a patient or caregiver with Cystic Fibrosis
You never do. Instead, other people get paid for your work: all the treatments: meds and trials, devices, hospitalizations, doctors […]
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 […]
A Young Mom is Exploring BlockChain Technology
I me Julia at the Global Genes Conference in California last September. She and I share an interest in BlockChain […]
Gratitude! Remembering Blake’s example!
We all can reach back in our memories and think of something or someone who made a difference and just […]
Market Research for Pulmozyme Users: Gift Cards given for an on line interview.
Again, this year we have been asked to participate in on-line Market Research. We are seeking three different groups for […]
Your Cystic Fibrosis Data is Valuable! Watch the Video…Take the Survey!
We hope you agree! Tell us what you think..Be Counted! Take the SURVEY NOW! Video by Lance 2020 ~ 1 […]
An Interview: Jeanne Barnett and RXDigitalMarketing
Buddy Scalera of RXDigital Marketing interviewed Jeanne Barnett (founder of CysticFibrosis.com) on August 31, 2017. If you are curious about […]
A Brain, A Heart, Courage: the e-Patient community for Cystic Fibrosis
Back in 2010, Jeanne Barnett wrote about the e-patient, using the metaphor of the Wizard of Oz: it is still […]
D3forME Transdermal Vitamin D Patch: do you qualify?
Learn more about the eligibility criteria and how to apply for the D3forMe Transdermal Vitamin D patch through Healthwell’s Cystic […]
Orkambi has simply changed my life…a Cystic Fibrosis reflection
A member of our community with Cystic Fibrosis reflects on two years since starting Orkambi, a medication used to treat […]