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Feb

CFFC Facebook Posts – February 2020 – Part 2

02/15/2020Iron Deficiency Common Among CF Patients and Requires Routine Screening and Guidelines, Study Suggests – This study demonstrates the broad spectrum of effects CF has on body chemistry and the need for comprehensive analysis in determining CF care.

02/16/2020My CF family: love in all its forms – A belated Valentine’s Day greeting from the other side of the Atlantic.

02/17/2020The Limits of Antimicrobial Sensitivity Testing in Cystic Fibrosis – Although a little dense, this article points out the difference in assessing antibiotic strategy between CF individuals and other populations. The researchers concluded that a partnership between pulmonologists and infectious disease doctors will produce the best results for the individual.

02/18/2020 – There’s been a lot of talk about the medical benefits of Trikafta but not much about paying for it. CF Roundtable is hosting a webinar that will deal with Trikafta and Social Security benefits. [Webinar was held 02/23/2020.]

02/19/2020UK CF Medical Associations statement on coronavirus – There is some good, non-panic advice in this advisory from the UK.

02/21/2020Majority of Home Nebulizers Used by CF Children Contaminated with Microorganisms, Leading to Exacerbated Symptoms, Study Finds – Another instance where the headline seems to be common sense. The full results of the study show that all steps in the recommended cleaning protocol must be followed to be effective.

02/22/2020Empowering Your Outer Circle to Advocate – This blogger extends the definition of advocacy.

02/23/2020Public Comment: Post Lung Transplant CF Care Guidelines – Advances in CF treatments have created the need for additional standards for care. CFF is offering the opportunity to weigh in on post-transplant guidelines. The comment period is open now and runs through March 5th.

02/24/2020Noninvasive XV Technology May Lead to Faster CF Diagnosis and Better Treatment – Faster diagnosis is good; noninvasive techniques is even better.

02/25/2020How Do You Value Your Life With Cystic Fibrosis? – Gunnar Esiason has another advocacy crusade; this time it’s about a purportedly unbiased approach to calculating the value of medications. As noted in the blog, this methodology has prevented approval of CFTR modulators in Canada and the UK.

02/26/2020Showing Strength By Asking for Help – Yes, self-advocacy may involve asking for help.

02/27/2020The latest on interim access – In the post we shared on Tuesday, Gunnar Esiason talked bout the impact that statistical measurements have on the approval of drugs. This story from Cystic Fibrosis Trust Describes the process they will use (including quality of life measures) to support the approval of Orkambi and Symkevi in the UK.

02/28/2020Keeping CF kids healthy in winter: A Parent’s Perspective – With the news full of a growing virus threat, this blog from CF Canada has some tinely advice.

02/29/2020An Evening with Gunnar and Darcy – We have added more details for our Evening with Gunnar and Darcy, CFFC’s community information event for 2020.


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