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AdvocacyFinancialLiving With CF

Equal Access to Treatment for All with Cystic Fibrosis in the US?

Just in from Tamika Grubbs: Cystic Fibrosis is the same disease for at least 30,000 people in the united states and approximately 70,000 worldwide, but depending on where you reside and what insurance you have there could be big differences in your access and quality of care. I am a …

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Advocacyfeatured_memberSupport

The Unidos pela Vida Institute – spreading knowledge about Cystic Fibrosis in Brazil

Join us today as we learn more about the Unidos pela Vida Institute for Cystic Fibrosis in Brazil. Thank you to Verônica Stasiak and Pamela Mazini Stürmer for supplying us with the below information, translated to English. We wish them good luck with the great work they are doing to spread awareness …

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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 …

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AdvocacyLiving With CFSocial 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 …

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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 …

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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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