Network News: May 2019

In this issue of Network News, read about the advocates who shared their cystic fibrosis stories with lawmakers on Capitol Hill; the role technology is playing in sustaining daily care; how you can help recruit for the RARE study; and more.

What You Need To Know

Blog Post

CF Advocates Visit the Capital During 13th Annual March on the Hill

On March 7, more than 150 volunteers participated in more than 315 meetings with members of Congress and their staff to advocate for the needs of the cystic fibrosis community including access to affordable and adequate coverage and robust funding for the National Institutes of Health and the U.S. Food and Drug Administration.

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  1. Article

    Sustaining Mental Health Care: Technology Closes the Distance

    The Mike McMorris Care Center in Denver is testing telehealth to sustain mental health care for patients who can’t easily travel to the center.

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  2. Article

    The RARE Study Needs Help Recruiting Adults With Rare Mutations

    Investigators are looking for people with two rare CFTR mutations to enroll in the RARE study, which seeks to inform the development of effective, targeted therapies for people who do not currently have a viable CFTR modulator on the horizon.

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  3. Article

    Help Your Patients and Their Families Connect With Others Living With CF

    Learn how you can help your patients and their families connect with others living with cystic fibrosis through CF Peer Connect.

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  1. Article

    Sharing Data to Improve CF Care: Updates From the Patient Registry and the PFEC Survey

    Data can more easily be shared now that an online option can be used to request data from the Cystic Fibrosis Foundation Patient Registry; lay summaries of research from Registry data are being published; and results from the revised Patient and Family Experience of Care surveys can be used to help with shared decision-making.

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  2. Article

    Clinician Input Spurs Compass Changes

    Informed by feedback received from cystic fibrosis care teams in 2018, CF Foundation Compass continues to offer new resources, as well as enhance current services to make connecting to Compass easier.

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  3. Article

    While Honoring Her Legacy, the CF Community Mourns the Loss of Sue Koziol

    We are proud to remember Sue Koziol for her contributions to the cystic fibrosis community, and for making a tremendous difference in the lives of people with CF.

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  4. Article

    Special Course at NACFC Aims to Deepen Partnerships Through Communication

    Join a special cystic fibrosis-specific course at this year’s North American Cystic Fibrosis Conference intended to help clinicians improve their partnerships with patients and families.

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FIND A SOLUTION

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