What You Need To Know

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How the Wisconsin Team Used Data and the Voice of Their Patients and Families to Improve Care

The pediatric care team from the University of Wisconsin-Madison combined the Experience of Care Survey, the quality improvement process and the voice of their patients and families to influence hospital administration to improve the delivery of care.

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    CF by the Numbers

    The Cystic Fibrosis Foundation Patient Registry allows our community to examine trends over time. In this issue, we examine data trends of the relationship between lung function and nutritional outcomes.

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  2. Article

    Partnerships for Sustaining Daily Care: Learning Through Stories

    Trusting, collaborative partnerships among care teams, patients and families are critical to helping manage daily cystic fibrosis care. Through storytelling, our community will learn about the key elements supporting these relationships.

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    CF Health Check: Sharing Data to Enable Informed Partnerships in CF Care

    An innovative patient portal called CF Health Check will allow people with cystic fibrosis, their families and their care teams to access shared data through a series of digital dashboards to inform care.

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    Winter 2017 Quality Improvement Update

    The Cystic Fibrosis Foundation supports quality improvement (QI) initiatives to advance the quality of cystic fibrosis care. The following are QI updates for 2017.

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    Winter 2017 Clinical Practice Guidelines Update

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

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  3. Article

    Stock Up on CF Foundation Educational Resources!

    The Cystic Fibrosis Foundation offers free educational resources on a variety of topics in many formats to accommodate different learning styles. Learn about how to obtain resources for your CF Center.

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    Clinical Research Referral Support Program

    The Clinical Research Referral Support Program (CRRSP) helps care centers offset the time and effort required to identify and refer patients for enrollment in clinical trials.

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  5. Article

    Winter 2017 Community Partnerships Update

    In 2017, the Community Partnerships Department will launch and expand programs that bring the perspective of people with cystic fibrosis and their families into all Cystic Fibrosis Foundation activities to support and partner with people touched by CF every day.

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    Winter 2017 Policy and Access Update

    Learn how the Cystic Fibrosis Foundation has been working with providers and people with cystic fibrosis and their families to improve access to CF treatments and care.

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  7. Article

    Health Care Reform and Advocacy Efforts

    With health care reform as a top priority for the incoming administration, the Cystic Fibrosis Foundation is working to ensure that any reforms put into place recognize the unique needs of people living with cystic fibrosis.

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    Every teamMATE Brings Us Closer to a Cure

    You are invited to become a Cystic Fibrosis Foundation teamMATE by choosing opportunities that best match your interest and skills.

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  9. Article

    In Memoriam

    We are proud to remember Barbara Chatfield, Fr. John Mangos and Mary Rose as champions for cystic fibrosis and for their contributions to the CF community. Their work made a tremendous difference in the lives of people with CF.

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