The latest updates for February 16, 2023


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CF Foundation External Racial Justice Working Group Releases New Recommendations

To work toward addressing health inequities in cystic fibrosis, the Foundation’s External Racial Justice Working Group has been
focusing on the unique challenges Black people with CF face ([link removed]). The group, comprising Foundation staff and external advisors from the broader CF community, including people with CF, family members, researchers, and care team members, has released its recommendations in two key focus areas: health equity and outcomes and diverse workforce development.

Read the recommendations » ([link removed])
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CF Foundation Applauds Reintroduction of HELP Copays Act

This week, we issued a statement
supporting the reintroduction of the Help Ensure Lower Patient (HELP) Copays Act ([link removed]), urging Congress to pass the bill swiftly. This bipartisan bill requires copay assistance to be applied to patient cost-sharing requirements and closes a loophole in private employer health plan essential health benefits coverage.

Read our statement » ([link removed])




Join Adults with CF at BreatheCon 2023

Adults with cystic fibrosis are
invited to join BreatheCon February 23-25 ([link removed])! During this unique, virtual event, you’ll have an opportunity to gather with others in various ways including panels, small group discussions, affinity groups, social activities, and more. Whether you’re seeking support, looking to share lessons learned, or just want to socialize, you are welcomed and encouraged to attend.

Register now » ([link removed])
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Share Your Experiences to Help Further CF Research

Have you or your child with cystic fibrosis experienced symptoms such as arthritis, rash, unusual gastrointestinal symptoms, or been diagnosed with an autoimmune condition, in addition to CF?
We want to hear from you ([link removed]). Join Community Voice today to participate in an anonymous survey to help researchers understand symptoms in people with CF that might suggest an autoimmune disease and gain insights from those who have been diagnosed with an autoimmune disease. By joining, you’ll also learn about the experiences of others with CF.

Sign up for Community Voice » ([link removed])




Become a Tomorrow’s Leader

This week, young professionals ages 21-40 who want to grow both personally and professionally are
invited to join Tomorrow’s Leaders and see what it’s all about ([link removed])! There are so many ways to get involved, virtually and in-person, including participating in online professional development opportunities, helping the CF community through advocacy efforts, and supporting local events.

Connect with other young professionals » ([link removed])




WE WILL NOT REST UNTIL WE FIND A CURE


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