CF Foundation Formalizes Final Set of Recommendations From External Racial Justice Working Group

The Foundation, in collaboration with external community advisors, finalizes recommendations in area of Community to help foster more inclusion and improve the experiences of Black people living with and impacted by cystic fibrosis.

Oct. 26, 2023 | 4 min read

Three years ago, the CF Foundation launched the External Racial Justice Working Group (ERJWG) to focus on better understanding and helping the Foundation address the unique barriers and challenges that Black people with CF face. The ERJWG is a collaboration between Foundation staff and external advisors from the broader CF community, including Black people living with or impacted by CF, researchers, and care team members with multidisciplinary backgrounds. The group has developed recommendations to help the Foundation improve its programs, processes, and policies in three key areas: Health Equity and Outcomes, Diverse Workforce Development, and Community.  

ERJWG Efforts to Date

Earlier this year, the Foundation shared more about recommendations finalized in two initial areas:  

  • Health Equity and Outcomes — Supporting improvements in care and care delivery to help achieve equitable outcomes for Black people with CF 

  • Diverse Workforce Development — Advancing a robust pipeline of diverse health care professionals and researchers from multidisciplinary backgrounds focused on CF who are equipped to address the changing health care needs of all people with CF.  

Finalizing Community Recommendations 

The third and final focus area for the ERJWG is Community, with recommendations aiming to enhance and create spaces, activities, programs, and resources for Black people living with and impacted by CF, where they feel included and are provided the opportunities to have their individual needs and preferences met. These recommendations will guide the Foundation in fostering a more inclusive community and creating an environment where Black people living with and impacted by CF are welcome, represented, and valued.  

Recommendations in this area focused on four key themes and corresponding goals: 

  • Representation, Equity, and Inclusion — Taking action informed by the experiences of Black people living with or impacted by CF to create an environment where they are welcomed, represented, and valued 

  • Education, Resources, and Support Programs — Creating or tailoring accessible materials, resources, and support programs to create the opportunity for Black people living with or impacted by CF to feel supported and receive advanced, high-quality, specialized care 

  • Training — Supporting broad training programs that enable effective, positive interactions with Black people living with or impacted by CF, no matter their point of interaction with the CF Foundation or at their CF care center  

  • Communications — Developing communications that are informed by Black people living with or impacted by CF to provide timely, relevant support and care information utilizing communication tactics that are most effective in reaching the intended audience  

The Foundation is grateful for the participation of ERJWG members, especially external advisors who graciously shared their lived experiences and expertise to inform this effort. More detail and examples of specific recommendations from all three focus areas of the ERJWG (Health Equity and Outcomes, Diverse Workforce Development, Community) can be found in this brochure.  

Roadmap to Implementation

With Community recommendations now finalized, the ERJWG has reached an exciting milestone in this effort. This work continues as the Foundation is in the process of developing an implementation roadmap, which includes a comprehensive and multi-year implementation plan taking into consideration timing, resourcing, and evaluation of impact.   

We know cystic fibrosis affects people of every racial and ethnic group. And historically, not enough has been done to celebrate the diversity of the CF community or recognize the unique challenges underrepresented groups have faced. As these recommendations are implemented, we anticipate that the impact will span more broadly across different communities within CF. 

The Foundation remains committed to continuing to work with the community on the long-term, sustained effort necessary to embed the principles of equity, racial justice, diversity, and inclusion (ERJDI) into all the organization does. More information on ERJDI-related efforts can be found through subscribing to email updates or visiting Our Commitment.

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