WelcometoCFTechnology
APP for CFLiving With CF

Welcome to CFTechnology.org video

We have a new introductory video about CFTechnology.org. Thank you to the talented Blake (with CF) for the fantastic job on the creation of this animated video. If you like this video, please like and share, as we are still trying to attract the right funding and partners to make …

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genomic-phenotypic-diaries-fig2
APP for CFLiving With CFSurvey

A New Model for Patient Engagement for Cystic Fibrosis Patients and Caregivers

Our blog appears in the DIA global forum. It has the results of our initial survey (which took place from 2017-2018) where 1200 of you responded, both patients and caregivers. CFTechnology.org, a non-profit, global online community of over 18,000 cystic fibrosis (CF) patients and caregivers, has launched a study to …

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Survey_graphic
APP for CFLiving With CF

CURE-E-US: Our CF community has an UNMET NEED (Part 3)

The survey: “Discovery, Research, and Profit”  has ended and I have presented at the World Orphan Drug Congress in Maryland. I presented the story of how the survey came to be, and our motivation for wanting to move forward with building an app as we have identified an unmet need.  You …

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