What You Need To Know

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Statements, Letters, and Regulatory Comments

By educating elected officials and other government decision-makers on the needs of the cystic fibrosis community, the Cystic Fibrosis Foundation works to shape public policy to help our efforts to cure CF and provide all people with CF the opportunity to live full, healthy lives. Below find a listing of our state and federal statements, letters, and regulatory comments submitted from March 2019-to date.

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  1. Download

    Policy and Advocacy Response to the COVID-19 Pandemic

    Learn how the Cystic Fibrosis Foundation has been actively engaging state and federal policy makers throughout the COVID-19 pandemic to ensure that people with CF have continued access to care and coverage.

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  2. Advocacy News

    The Cystic Fibrosis Foundation Urges Congress to Expand Paid Leave Policies

    More than 160 organizations join the Cystic Fibrosis Foundation in asking Congress to expand paid family and medical leave for people with chronic conditions, such as cystic fibrosis.

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  3. Article

    COVID-19 Triage Plans and Cystic Fibrosis

    As states and health systems prepare for potential surges in COVID-19 cases and increased demand for intensive care, many are creating policies to decide how they will prioritize services and equipment. The Cystic Fibrosis Foundation’s position is clear: Any guideline that unfairly disadvantages people with CF due to outdated information and perceptions is unacceptable.

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  1. Advocacy News

    Cystic Fibrosis Foundation Statement on COVID-19 Triage Plans

    A cystic fibrosis diagnosis must not disqualify an individual from life-saving care

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  2. Resource

    Take Action Today

    Contact your elected officials today! Through our action center, we make it easy for you to email, tweet, or call your state and federal legislators on policy issues that are most urgent for the cystic fibrosis community. Taking action is easy, and it will only take a few minutes to make a difference for someone you know with cystic fibrosis.

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