Going Back to School with Cystic Fibrosis (from our Archives)

Monday, August 25, 2008 written by Lauren Beyenhoff based on a survey at Cysticfibrosis.com FreePics CF Goes Back to School Sharpened pencils, new backpacks and notebooks; ‘Tis the season for heading back to school. Sending a child off to school for the first time can be an emotionally charged event. …

READ MORE →

Why Cystic Fibrosis and Blockchain? by LittleLab4CF

LittleLab4CF  David Orthman, PhD How can BlockChain facilitate Pharmaceutical companies go-to-market strategy? The greatest barrier to doing business is inertia. The red tape will stop or stall any new commerce. BlockChain can offer the simplest path from product to payment and delivery. First and foremost, Pharmaceutical companies eschew re-inventing wheels. …

READ MORE →

LittleLab4CF (our own Geneticist with Cystic Fibrosis) Helps us Understand Pharma/Patients and Blockchain

How can the data-sharing capabilities of BlockChain lead to lower development costs and increased efficiency? BlockChain can be compared to a suite of software utilities like Microsoft’s Office package. Office software and similar products have a word processor, spread sheet, product promotion and business presentation applications like PowerPoint that are …

READ MORE →
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 →