CF Foundation Reflects on Progress Toward Equity, Racial Justice, Diversity, and Inclusion

The Foundation’s commitment to these principles will continue to be a cornerstone of the Foundation’s work to advance our mission in 2023.

| 4 min read

The cystic fibrosis community comprises individuals of all identities and from every racial and ethnic group. The Cystic Fibrosis Foundation is committed to listening, learning, and evolving our understanding of the diverse lived experiences of people with CF. We are working to deepen our understanding of the complexities of the individual CF journey, which often includes facing health inequities — from delays in diagnosis to engagement barriers in care. Doing this work is critical to advancing our mission of finding a cure for this disease for all individuals with CF.  

Last year, we took several crucial steps to better understand the experiences of underrepresented people with CF, particularly the challenges that communities of color face. For example, we convened an External Racial Justice Working Group to understand the unique barriers and challenges Black people with CF experience and to identify ways to improve our programs, processes, and policies to advance more equitable outcomes. By partnering with and engaging members of our community — from individuals with CF to care team members — we’ve been able to identify several opportunities to better embed the principles of equity, racial justice, diversity, and inclusion in our work. Some of the highlights from this past year, many of which remain ongoing, include:   

Cure

  • Invested in 35 major industry research programs focused on genetic therapies, increasing our focus on rare and nonsense mutations, which are seen more often among communities of color 

  • Continued to fund theratyping, which helps enable those with rare mutations to potentially access already approved modulators   

  • Adapted reimbursement policies for Therapeutics Development Network research participants, with a focus on reducing barriers to participation (such as transportation or childcare costs) 

Care

  • Established a nationwide newborn screening initiative to improve equity, sensitivity, and timeliness in diagnosing people of color with CF 

  • Launched summer research programs designed to recruit and support undergrads and medical students from underrepresented populations so they can successfully begin careers in CF care and research  

  • Programmed a dedicated track for health equity, care delivery, and access to care at the 2022 North American CF Conference (featuring sessions including Culturally Aware of CF Care

  • Published a comprehensive toolkit for CF care teams on understanding social determinants of health, identifying risk factors, and addressing specific needs of people with CF 

Community

  • Awarded Impact Grants to four new organizations that support diverse CF journeys from diagnosis through various life milestones 

  • Made the first Spanish-speaking match for the CF Peer Connect program 

  • Addressed more calls from Spanish-speaking community members (through Compass bilingual case managers) than any previous year, likely due to joint care center and community outreach efforts conducted by the Compass/Community Voice teams 

Strengthening the Organization

  • Established the Racial Justice, Equity, and Inclusion Advisory Council and executed our inclusive talent strategy, which increased diverse representation across the Foundation 

  • Launched five identity-based Employee Resource Groups and the Development Equity Mentorship Program 

  • Provided anti-discrimination training to all CF Foundation staff, access to diversity training curriculum and certification programs for over 300 employees, and held heritage, pride, and awareness month celebrations 

  • Joined more than 2,300 leading organizations in signing the CEO Action for Diversity and Inclusion pledge to signal our commitment to incorporating diversity in every facet of our work

As we look to make progress toward our mission of finding a cure for all people with CF, we’ll continue identifying opportunities to better embed these principles into everything we do. In 2023, many of our efforts will focus on driving improvement in three key focus areas: health equity and outcomes, diverse workforce development, and community.  

For additional information on these efforts, visit cff.org/OurCommitment and subscribe to email updates about our commitment to equity, racial justice, diversity, and inclusion. 

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About the CF Foundation | Diversity, Equity, and Inclusion
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