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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 …

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AdvocacyFinancialLiving With CFResources

Make Friends with your Legislators! Tell them about Cystic Fibrosis.

Especially for Cystic Fibrosis, how the government acts on the Accountable Care Act  (ObamaCare) does make a difference! Since Healthcare was such a big issue in the last election: Keep in touch with your legislators…YOU HIRED THEM!  They need to hear from YOU! Make them your FRIENDS! Congress: Find your …

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AdvocacyFinancialLiving With CFTreatments

Understanding Pharma Controversies in the News

Many people have heard of the company, Turing Pharmaceuticals, which last year raised the price of a drug by over 5,000%, but most people don’t understand how and why that was possible. Looking at the issues behind the Turing Pharmaceutical controversy of this past year is worthwhile even though the …

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AdvocacyFinancialLiving With CF

Put your legislators on your team!

by: Peter S. Barnett PT, DPT, OCS In the USA… Do you know who your lawmakers are? To anyone who has an illness, and especially families dealing with Cystic Fibrosis; it matters that you know your lawmakers. Everything (Medicare/Medicaid/SSDI, Commercial Insurance, Premium Rates etc) about healthcare is connected to politicians. …

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AdvocacyClinical Trials

We Lobby

A Brief History of Our Lobbying Efforts in 2015   In April, 2015, we sent this letter to the FDA Committee: Sent: Thursday, April 02, 2015 12:17 PM To: PADAC Subject: on line patient community at cysticfibrosis.com Dear Dr. Hong, We run an on line patient community at cysticfibrosis.com. Several …

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