What You Need To Know

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Join Us for the 2016 NACFC in Orlando

We hope you will join us at the 30th Annual North American Cystic Fibrosis Conference (NACFC) in Orlando, Oct. 27-29, with pre-conference sessions on Oct. 26.

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  1. News

    FDA Expands Use of Orkambi® to Children Ages 6 to 11 With CF

    The U.S. Food and Drug Administration (FDA) approved the use of lumacaftor/ivacaftor (Orkambi®) today for children with cystic fibrosis ages 6 to 11, who have two copies of the F508del mutation.

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  2. Article

    CF by the Numbers: Fall 2016

    Throughout NACFC, there will be multiple opportunities to learn more about the Cystic Fibrosis Foundation Patient Registry and the research being conducted with the data in the Registry. This includes the third plenary, poster sessions and workshops.

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  3. Article

    Supporting Partnerships for Sustaining Daily Care

    Partnerships for Sustaining Daily Care is tapping the CF community to address barriers in managing daily care. This initiative will establish objective measures, promote a national dialogue and design and test interventions.

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  1. Article

    Electronic Prototype Testing of a “Coproduction of Care” Dashboard

    The Dartmouth Institute and the Cystic Fibrosis Foundation, in partnership with Ann & Robert H. Lurie Children’s Hospital of Chicago/Northwestern, University of Minnesota and Children’s Hospitals and Clinics of Minnesota, will test an electronic version of a “coproduction of care” dashboard.

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  2. Article

    Now Live: New Clinical Trials Tools

    A new suite of online tools and resources, including a Clinical Trial Finder and Drug Development Pipeline, have been designed to help people with cystic fibrosis find the right trial for them.

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  3. Article

    Publication Watch: Fall 2016

    Highlighted is recently published work from the CF Foundation’s Care Center Network and our colleagues from outside of the United States.

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  4. Article

    Clinical Practice Guidelines Update: Fall 2016

    The CF Foundation develops clinical practice guidelines to help guide the care of individuals with cystic fibrosis. The guidelines are based on the review of the available literature and consultation with experts on best practices. The following updates are from the clinical practice guidelines committees.

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  5. Article

    Educational Resources, Town Halls and Webinars

    Learn more about the latest resources available to you and watch archived town halls and webinars that you may have missed.

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  6. Article

    BreatheCon 2016: A Virtual Conference for Adults With CF

    BreatheCon is a virtual event created by adults with CF so that they can connect, learn, share and inspire each other. Held on Oct. 7-8, 2016, the video conference includes keynote speakers, panel discussions and group breakouts.

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  7. Article

    A Pilot Learning Network: Teams Join Wave 1

    Community members designed a CF Care Model of the Future for testing via the Pilot Learning Network (PLN). This model is envisioned as a system that will make it easier for everyone in the community to work together at scale to improve health, care and costs for people with CF.

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  8. Article

    Patient and Family Experience of Care Survey

    Feedback on the experiences of patients and families at 120 programs are now being collected as part of the Experience of Care Survey.

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  9. Article

    Learning and Leadership Collaborative: Fundamental and Virtual Programs

    A new group of teams supported by quality coaches have joined the Fundamentals Learning and Leadership Collaborative (FUN LLC2) and the Virtual Improvement Program Fundamentals asynchronous QI course (VIP-F2).

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  10. Article

    Albert Faro Joins the Cystic Fibrosis Foundation

    The Cystic Fibrosis Foundation welcomes Albert Faro, M.D., as senior director of clinical affairs.

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  11. Article

    Care Teams Join Forces for a Shared Mission

    The adult care center at University of Texas Southwestern Medical Center and the pediatric care center at Children’s Medical Center of Dallas joined forces in support of the Northeast Texas Chapter’s Dallas Great Strides walk.

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  12. Article

    Learn About Social Security Administration Disability Criteria Updates

    The Social Security Administration (SSA) has published updated eligibility requirements for disability benefits for people with CF. See the listserv for a link to the webinar featuring the SSA or visit the CF Foundation Compass booth at NACFC to learn more.

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  13. Article

    Visit Our Compass and Policy Teams at NACFC!

    Learn more about our work to help ensure that people with cystic fibrosis have access to high-quality treatments and care, and to state insurance coverage of hypertonic saline, vitamins and enteral nutrition products, as well as how Compass can help you and your patients.

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Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.