WelcometoCFTechnology

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 …

READ MORE →
genomic-phenotypic-diaries-fig2

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 …

READ MORE →
Oxygen mask on white

SSDI for people with Cystic Fibrosis

Does Cystic Fibrosis Qualify as a Disability for SSDI? Learn more about SSDI and Cystic Fibrosis. Article written by Danielle Roberts, a Medicare insurance expert. You can learn more about her and her team at https://boomerbenefits.com. *** About 30,000 people have cystic fibrosis in the U.S., according to the Cystic Fibrosis Foundation. As …

READ MORE →
Survey_graphic

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 …

READ MORE →
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 …

READ MORE →

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.  …

READ MORE →
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 …

READ MORE →
30184443_10100500318834163_2038331598_n

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 …

READ MORE →
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 …

READ MORE →
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 …

READ MORE →