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 …
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 …
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 …
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 …
North American Cystic Fibrosis Conference 2016
The 30th annual North American Cystic Fibrosis Conference took place in October 2016 in Orlando, FL and offered more more than 60 sessions on topics related to CF. It was attended by physicians, research scientists, nurses, respiratory and physical therapists, social workers and pharmacists and more. The summary from the session …
Rare Disease Patient Advocacy Summit
Later this week, Jeanne Barnett will be attending the fifth annual RARE Patient Advocacy Summit run by Global Genes in Huntington Beach, California. The goal of this year’s RARE Patient Advocacy Summit is for patients, caregivers, and advocates to walk away equipped with actionable next steps whether you have been …
Barnyard Dust and Preventing Asthma in Children (one of many Cystic Fibrosis symptoms)
People with cystic fibrosis have infection and inflammation in their lungs, and some also have problems with asthma, making asthma one of the many cystic fibrosis symptoms that patients experience. From the CDC: the prevalence of asthma in the general population of the U.S. is 7-9%, and as many as …
SuperHero DNA
Study finds individuals immune to severe diseases. A new study has found that certain people’s genes have evolved in such a way that they are immune to certain severe inherited conditions. The study involved the analysis of previously collected DNA sets totaling 589,306 genomes from around the world with researchers hoping …
Surprising Benefits from CF Research
CF Research May Help Agriculture Cystic Fibrosis is often referred to as an orphan disease i.e. research benefits a relatively small portion of the general population. But here is a serendipitous situation in which CF research may help agriculture on a large scale. A graduate student at the University of …
UCSD’s 3D Printed Liver Cells Most Liver-like Yet
3 D Printed Liver Image from ccsmobile.co.uk Feb 9, 2016 Home to the original bioprinting firm, Organovo, San Diego is, apparently, a hotbed of bioprinting activity. Or, at the very least, the University of California, San Diego is make its own strides in the field of bioprinted liver tissue. Published …