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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Living With CFNews & EventsUncategorized

Cure-E-Us: World Orphan Drug Congress Part 2

  The Initial Industry CFTR Screen Programs consisted of Epix, Genzyme, Galapagos, Fold, Amri, Aurora, and CombinatoRx Preston Campbell the CEO of the CFFoundation spoke first about the history of the Foundation but the next part was about deciding on the companies that could  begin the work of Precision Medicine.  …

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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
Living With CFTechnology

Cure-E-Us Where is our Survey Leading?

Of the 1112 participants for our survey “Discovery, Research, and Profit” www.CFTechnology.org only two claimed to be physicians! One from Florida and one from California. 53% are patients, and 44% are caregivers. Who has the authority?  Since 1996, when our forums at CysticFibrosis.com began, you may have wondered: “Where are …

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AI
FinancialGeneticsLiving With CF

Artificial Intelligence (AI)as told to Imogene by LittleLab4CF

Text by LittleLab4CF…helpful links added by Imogene. Big data was applied to the first human genome that involved many international efforts. Basic genetics It was cost compared with the first atomic bomb. Craig Venter cut through it with AI and massively parallel processing. A virtual human is the end game …

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Living With CFNews & Events

Survey: Future Casting for our Cystic Fibrosis Community! (Updates)

Thanks to 860 participants for taking our survey at www.cftechnology.org. A survey can be a tool to future cast!  and this one is doing just that. Most of the participants are from the USA (90%), though we have invited a global community! 49 states are represented and the most participants …

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Living With CFNews & Events

Blockchain, Cystic Fibrosis and Linnia

I want you all to know we are looking into the Blockchain company Ethereum and this email suggests we have similar goals. Currently: 781 of you have taken our survey at www.cftechnology.org and 90% agree: “We should be paid for our valuable data.” Read how the missions match up nicely… …

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AdvocacyLiving With CF

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 and health care providers. BUT Perhaps you don’t care…this is the system that has worked since the Hippocratic Oath came into being, declaring the doctors at the helm. Through the …

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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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juliablockchain
Living With CFResearch

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 technology. For me, it is a secure way to share data and get paid. Through our survey, we found that 90% of you (530+participants would like to be paid for …

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