Getting paid for all the work it takes being a patient or caregiver with Cystic Fibrosis

Imogene

You never do. Instead, other people get paid for your work: all the treatments: meds and trials, devices, hospitalizations, doctors […]

Read More

Cure-E-Us…Cystic Fibrosis 2018!

Imogene

Cure-E-Us! Strange as it may seem in this time of healthcare anxiety, and a period of sustained political transformation during […]

Read More

A Young Mom is Exploring BlockChain Technology

Imogene

I me Julia at the Global Genes Conference in California last September. She and I share an interest in BlockChain […]

Read More

Gratitude! Remembering Blake’s example!

Imogene

We all can reach back in our memories and think of something or someone who made a difference and just […]

Read More

Market Research for Pulmozyme Users: Gift Cards given for an on line interview.

Imogene

Again, this year we have been asked to participate in on-line Market Research. We are seeking three different groups for […]

Read More

Your Cystic Fibrosis Data is Valuable! Watch the Video…Take the Survey!

Imogene

We hope you agree! Tell us what you think..Be Counted! Take the SURVEY NOW! Video by Lance 2020 ~ 1 […]

Read More

An Interview: Jeanne Barnett and RXDigitalMarketing

Imogene

Buddy Scalera of RXDigital Marketing interviewed Jeanne Barnett (founder of CysticFibrosis.com) on August 31, 2017. If you are curious about […]

Read More

A Brain, A Heart, Courage: the e-Patient community for Cystic Fibrosis

Imogene

Back in 2010, Jeanne Barnett wrote about the e-patient, using the metaphor of the Wizard of Oz: it is still […]

Read More

D3forME Transdermal Vitamin D Patch: do you qualify?

Imogene

Learn more about the eligibility criteria and how to apply for the D3forMe Transdermal Vitamin D patch through Healthwell’s Cystic […]

Read More

Orkambi has simply changed my life…a Cystic Fibrosis reflection

Imogene

A member of our community with Cystic Fibrosis reflects on two years since starting Orkambi, a medication used to treat […]

Read More
1 2 3 4 5 8