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FinancialLiving With CFSupportTransplantsTreatments

Miracle Flights: free medically-related air travel for ill patients, including for Cystic Fibrosis treatment

Struggling to cover the cost of air travel to receive your medical care? Miracle Flights assists patients through free commercial air travel to obtain special medical care. Read more about this fantastic organization and how to apply below…   Blog article written in conjunction with Brooke Freeman, Community Outreach Officer …

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legislation
AdvocacyFinancialLiving With CF

Make Friends with your Legislators!

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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vertex
FinancialLiving With CFTreatments

Mom takes on Vertex CEO about pricey CF Drugs

In October, Oklahoma-based journalist and mom Juliana Keeping traveled to Boston with her son to confront Jeffrey Leiden, the CEO of Vertex Pharmaceuticals. Keeping’s son, Eli, has cystic fibrosis, and she’s not happy that Vertex’s two-drug combo, Orkambi, costs $259,000 a year. So Keeping, who gathered more than 124,700 signatures on …

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FinancialLiving With CFTreatments

How Much Do Orphan Drugs Cost?

The high cost of CFTR correctors and potentiators has been in the news since the drugs were approved by the FDA. Many people have been concerned that private insurers and the government might deny coverage based on the cost. However, recent research into healthcare spending indicates that the overall impact …

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patient assistance controversy
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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donate
FinancialJoinLiving With CFSupport

Happy Mother’s Day – Please Donate!

CFTechnology.org is a non-profit parent to CysticFibrosis.com, your CF community website. In order to keep this valuable resource alive and kicking, your donations are urgently needed. It just takes a few minutes to donate $5, $15, $25, $50, even $100, or whatever you can afford to ensure the continued presence …

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FinancialLiving With CFSupport

Individual Counseling Offered

jricci brings us this great news: Through a very generous contribution Financial Support for Individual Counseling Services are being offered to the CF Community! Read More: CFQoL_Counseling_Flyer_2016

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FAQsFinancialLiving With CFSupport

Social Security Disability Benefits for people with Cystic Fibrosis

Introducing Deanna Power, the Director of Community Outreach for Social Security Disability Help. She wrote this article for our community at CysticFibrosis.com to help shed light on the subject of applying for disability benefits.   Applying for Disability Benefits with Cystic Fibrosis     by Deanna Power   Cystic fibrosis …

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governmentteam
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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FAQsFinancialLiving With CFSurvey

Financial: Your Questions from the 2015 Survey

Your Financial Questions From Our Survey in April 2015   How can you lower our out of pocket expenses in medications? Where else can we find financial help for the high cost of copays? Where can I get help with expenses? The high cost of medicines and machines need to …

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