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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jeannebarnettraredrugscongress
AdvocacyGeneticsResearch

Cure-E-Us: Imogene at the World Orphan Drug Conference 2018 Part 1

World Orphan Drug Conference 2018, April 25-27 (Part 1) Getting to the Conference! I drove from northern NJ …5 hours along the tiresome NJ Turnpike, over the Delaware Memorial Bridge, through Delaware which seems like the wink of an eye and then through Maryland, only to get confused…is it 695,95, …

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cure e us
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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social media feature pic jan 2017
JoinLiving With CFTreatments

New on Cystic Fibrosis Social Media (@knowCF)

What’s new on the Cystic Fibrosis social media pages (@KnowCF)? We are active on social media – want to know the latest news? Please follow the links to see what is new on our Cystic Fibrosis Social Media channels. Post your own comment – or just see what others are …

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Living With CFTechnologyTreatments

A Day with Portable Genomics for Cystic Fibrosis management

  Using the Portable Genomics App   CFtechnology and Portable Genomics are proud to create a partnership using a new, customizable app! In the Digital Age, it is no surprise that apps are finding their way into the medical field. Technology is everywhere, so why not harness the power of …

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