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Facebook Posts – June 2018 – Part 2

For those who do not use Facebook, here are the posts to the CFFC page for the second half of June 2018.

06/16/2018Epidemiology of CF: How registries can be used to advance our understanding of the CF population – We previously posted two articles with views on access to CF registry data. This article provides details regarding registries around the world and discusses uses of the data from the registries.

06/17/2018Tobacco Smoke Exposure Greatly Speeds Loss of Lung Function in Children with CF, Study Reports – There has been plenty of coverage on the danger of second-hand smoke. This study puts numbers on the affect to kids with CF.

0618/2018How I Went Vegan With CF – This blog posts demonstrates that you have options in picking the diet that meets meets your goals beyond the needs of CF.

06/19/2018Guidelines Needed for Listing CF Patients with Nontuberculous Mycobacteria Infections for Lung Transplants, Survey Finds – Advances in treatments and protocols are changing the criteria for accepting individuals into transplant programs.

06/20/2018I’m Not Lucky to Have Difficulty Gaining Weight – Just one more area where people outside the CF community may not understand this invisible disease.

06/21/2018“Five Feet Apart” Movie About Cystic Fibrosis Must Tread Carefully – Gunnar offers an interesting perspective on the dramatization of the infection control protocol.

06/22/2018Sign Up for CFFC Education Night – Check out this article on CFFC’s web site for an update on the Education Night program. Please use the link in the article to register so we can arrange for food and seating.

06/23/2018Understanding How Bacteria ‘Talk’ Could Hold Key for New CF Treatments, Study Suggests – While it may be less exciting than finding a cure, basic science is important to advancing treatments.

06/25/2018Why I Took a RARE Opportunity to Help Myself and Others – A story about participating in a clinical trial geared toward rarer mutations.

06/26/2018 – Pancreatic Cell Transplant Program Offers New Hope to Some CF Patients – A different kind of transplant preserve pancreatic function.

06/27/2018Apparently, Living Longer Isn’t of “Value” to Patients – One person’s view in the debate over the cost of CFTR modifier drugs.

06/28/2018The Benefits of Sharing Our CF Stories – Some Canadian friends sharing stories about sharing stories.

06/29/2018 CFFC Education Night Registration – Registrations are coming in. Don’t be the last one to sign up for CFFC Education Night on July 19th.

06/30/2018A Drug Costs $272,000 a Year – Not So Fast, Says New York State – A court case initiated by the NY Attorney General is seeking to reduce the cost of Orkambi for individuals covered by Medicaid.


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