Roche Virtual Summit Lauren Brenneman speaks Innovation and the CF community
Lauren Brenneman of CFTEchnology speaks about the mission of patients to take charge of their data at the Roche Virtual Summit Patient Panel
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. …
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. …
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 …
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… …
Gratitude! Remembering Blake’s example!
We all can reach back in our memories and think of something or someone who made a difference and just quietly “give thanks”. Blake (Lance2020) actually took the time many years later to thank us at CFTechnology.org for the gift of a flip camera, this was a digital camera before …
An Interview: Jeanne Barnett and RXDigitalMarketing
Buddy Scalera of RXDigital Marketing interviewed Jeanne Barnett (founder of CysticFibrosis.com) on August 31, 2017. If you are curious about the community at CysticFibrosis.com, where it came from and where it is positioning to lead the way, these are the topics of an interview Jeanne Barnett (founder of cysticfibrosis.com) had …
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 …
Tamika Grubbs RN Here to Help our Cystic Fibrosis Community!
Hello, my name is Tamika Grubbs and I am a CF nurse consultant with over 4 years of experience. In the past, I served as an Adult CF coordinator for Central Florida Pulmonary Group, CF Clinical Regional Specialist and CF Manager for Kroger Specialty Pharmacy (formerly TLCRx Pharmacy). I am …
Fertile Areas for Experimentation: a New App for Cystic Fibrosis!
One of our Cystic Fibrosis Digital Opinion Leaders speak about the need for an app that could help patients record information and reveal correlations. From one of our Digital Opinion Leaders! I would love an app that allows me to record information that I feel might be important so I …