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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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Medicare_CF

Medicare and Cystic Fibrosis

Learn more about how Medicare covers Cystic Fibrosis. Article written by Danielle K Roberts, a Medicare insurance expert at Boomer Benefits, where she and her team help educate consumers about Medicare works. *** Dealing with health insurance is complicated when you have a chronic disorder like cystic fibrosis—and Medicare can be even more …

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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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Lungs

Does Medicare Cover Lung Transplants?

Learn more about how the various parts of Medicare pay for treatment before, during and after a Lung Transplant. Article written by Danielle K Roberts, co-founder at Boomer Benefits, a licensed insurance agency that helps baby boomers navigate Medicare in 47 states. *** Lung transplants are complex surgical procedures which can …

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Coping with the Loss of a Spouse from CF

Guest Blog We strive to be optimistic about life with CF, but loss of a loved one is a harsh reality.  A  member of our community reached out to us at CysticFibrosis.com in hopes of sharing his experience as a spouse of someone who lived with CF. Jesse and Ashley’s Story …

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Cure E Us

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

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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ENF Scholarship and CF summer research program applications now open

  Applications for the Elizabeth Nash Foundation scholarship and summer CF research programs are now available. Please find relevant information below. Scholarship program The Elizabeth Nash Foundation awards scholarships to assist persons with CF to pursue undergraduate and graduate degrees. Grants range from $1,000 to $2,500 and are made directly to …

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LittleLab4CF on the potential of an enormously valuable Genomic Diary

This blog was reproduced from a post by LittleLab4CF , a Super Moderator on the cysticfibrosis.com forum.  “I found myself in a lively discussion with one of my doctor’s about the business of Genomics and what they really want. Dr. “Nancy” was remarking that she’d completed her Christmas shopping, buying 23&Me for pretty much …

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DIY nebulizer sterilizer hack for Cystic Fibrosis treatments (member story)

**Note: this is not medical advice and this method has not been approved by any medical professionals or suppliers. It is just a workaround method used by someone with CF. It should only be tried on nebulizer parts that can be boiled** My DIY nebulizer sterilizer hack I have a confession: …

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