social media feature pic jan 2017
Living With CFNews & EventsSocial Media

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 …

READ MORE →
Grubbs-headshot1497372210
Advocacyfeatured_memberLiving With CFNews & Events

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 …

READ MORE →
thedatawillseeyou now
AdheranceAdvocacyfeatured_memberNews & EventsTechnology

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 …

READ MORE →
charlesdarwinImogene
Living With CFNews & EventsResearchSupportTechnology

The Data Will See You Now! and Cystic Fibrosis Data is Valuable!

I was invited to speak at the PanagoraPharma Conference on Mobile Technology on June 28, 2017. I arrived first thing on Tuesday morning, slide set in hand. The 40th floor of Trade Tower 7 New York City is just as amazing as it sounds…but as I walked in, I was …

READ MORE →
T alpha 1
Clinical TrialsLiving With CFNews & EventsRespiratory Disease

New drug (Thymosin alpha 1) discovery: potential for Cystic Fibrosis treatment

According to an article published on www.sciencedaily.com, researchers have discovered a potential new drug to treat and stop the progression of cystic fibrosis. While many other promising drugs are in the pipeline, we here at cysticfibrosis.com will be keeping a keen eye on further developments of this medication. Read the …

READ MORE →
concert pills
Living With CFNews & EventsResearchTreatments

Treatment for Cystic Fibrosis: Vertex Acquires Concert’s CFTR Potentiator CTP-656

Vertex Pharmaceuticals recently purchased the Phase 2 cystic fibrosis potentiator drug CTP-656 from Concert Pharmaceuticals. The deal is estimated to be worth $250 million dollars. CTP-656 is intended to be a longer-acting, once daily version of Vertex’s drug ivacaftor, which aims to restore CFTR function in treatment for Cystic Fibrosis. …

READ MORE →
social media feature pic jan 2017
Living With CFNews & Events

New on our Cystic Fibrosis Social Media (@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 saying. February 2017   Facebook: Facebook.com/KnowCF Brian’s Genentech Pulmozyme Video: Click …

READ MORE →
social media feature pic jan 2017
JoinLiving With CFNews & EventsSupport

New on our Cystic Fibrosis Social Media (@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 saying. January 2017 Facebook: Facebook.com/KnowCF Facebook Member Post: A member of our …

READ MORE →
PGCFT
Living With CFNews & EventsResearchTechnology

Portable Genomics and CFTechnology.org Partnership for Cystic Fibrosis

From PRNewswire Portable Genomics and CFTechnology.org have entered into a partnership to enable cystic fibrosis patients to better collect, manage and share important biometrics with caregivers, researchers and the pharmaceutical industry News provided by Portable Genomics Jan 17, 2017, 06:04 ET SAN DIEGO, Jan. 17, 2017 /PRNewswire/ — Portable Genomics …

READ MORE →
orkambi_logo
Living With CFNews & Events

ORKAMBI® (Lumacaftor/Ivacaftor) latest news: Germany, Australia availability

ORKAMBI® reimbursement agreement reached for Germany – December 19, 2016 Vertex Announces German Reimbursement Agreement for ORKAMBI® (Lumacaftor/Ivacaftor), the First Medicine to Treat the Underlying Cause of Cystic Fibrosis in People Ages 12 and Older with Two Copies of the F508del Mutation –(BUSINESS WIRE)–Vertex Pharmaceuticals Incorporated (Nasdaq:VRTX) today announced it has …

READ MORE →