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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transplant
FAQsLiving With CFResourcesTransplantsTreatments

Cystic Fibrosis treatment: lung transplant facts and member experiences

Lung transplantation is something a person with Cystic Fibrosis might consider late in the progression of the disease, when life expectancy is about 1-2 more years and quality of life is severely compromised. It is a last resort in terms of Cystic Fibrosis treatment, but can be a life-saving procedure. …

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cfmainimagewabibaby
ContestsLiving With CFTreatments

Wabi Baby Steam Sterilizer Contest

Photography Contest for Cystic Fibrosis Awareness MonthEnter to Win! Take a photograph of your system for cleaning CF respiratory or feeding tube equipment and enter to win a Wabi Baby Steam Sterilizer & Dryer – the only commercial steam sterilizer to be tested on CF pathogens. Cleaning nebulizer parts is an important part …

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sinuses
FAQsLiving With CFRespiratory DiseaseTreatments

Cystic Fibrosis symptoms: Mayo clinic’s sinusitis treatment suggestions

For many patients, chronic sinusitis is a part of their many Cystic Fibrosis symptoms. From the Mayo Clinic, about sinusitis: The goal of treating chronic sinusitis is to: Reduce sinus inflammation Keep your nasal passages draining Eliminate the underlying cause Reduce the number of sinusitis flare-ups Treatments to relieve symptoms …

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pseudomonas
Clinical TrialsLiving With CFTreatments

In the News: Inhaled Levofloxacin & QIDP Designation

Raptor Pharmaceutical’s MP-376 (Inhaled Levofloxacin) granted QIDP Status by the FDA on March 16, 2016. What is Qualified Infectious Disease Product (QIDP) Designation? QIDP status gives a drug priority review by the FDA, eligibility for Fast Track designation, and an extension of marketing exclusivity. This incentivizes pharmaceutical companies to devote …

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EnzymeFAQ
FAQsGastrointestinal DiseaseLiving With CFTreatments

Enzymes – Frequently Asked Questions

Newly Diagnosed/Infancy The doctors want me to give the enzymes to my baby in food but he’s only a week old? I thought we weren’t supposed to give solids that early. My baby nurses by grazing. When do I give more enzymes? I’m supposed to give ½ an enzyme. How …

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bubby's enzymes
Gastrointestinal DiseaseLiving With CFParentingTreatmentsVideo

Toddler Bubby, taking enzymes for Cystic Fibrosis treatment

80%-90% of people with Cystic Fibrosis need to take enzyme capsules before they eat, as part of their Cystic Fibrosis treatment. In Cystic Fibrosis, as the lungs produce thick, sticky mucus, the pancreas also makes the same type of mucus that blocks the release of enzymes needed for digestion. When …

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nutraceuticals
Alternative MedicineLiving With CFSurveyTreatments

Your Questions on Nutraceuticals

From our Survey in 2015 Qualitative Research: YOUR Questions   What are some natural treatments that are safe and effective to enhance regular treatments? Who will work with CF patients regarding natural remedies such as essential oils? What foods, natural remedies, or supplements have most helped patients slow the progression …

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adayinthelife
GeneticsLiving With CFRespiratory DiseaseTreatments

How cystic fibrosis promotes lung infections

From the NIH At a Glance Scientists discovered how cystic fibrosis raises the risk for lung infections. The findings also identify a novel potential therapeutic target. Cystic fibrosis is an inherited disorder that results in a buildup of thick and sticky mucus in the lungs, airways, and other organs. Excess …

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