FSR Using $600K Grant to Improve Care for African American Patients

Yedida Y Bogachkov PhD avatar

by Yedida Y Bogachkov PhD |

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A $600,000 grant will help the Foundation for Sarcoidosis Research, known as FSR, advance investigations into this rare disease and address health disparities seen among African Americans with sarcoidosis.

The three-year grant is part of the Chan Zuckerberg Initiative’s Rare as One Project.

“The Foundation for Sarcoidosis Research is proud to partner with the Chan Zuckerberg Initiative: Rare as One to improve diagnostics and research in clinical trials and to ensure that we are able to provide representation by all impacted by this devastating disease,” Mary McGowan, CEO for FSR, said in a press release.

Sarcoidosis is an inflammatory disease that can lead to the formation of small abnormal lumps or nodules — called granulomas — in virtually any organ in the body, most commonly the lungs.

In the U.S., the disease affects African Americans more than any other group. African American women experience the highest rates of the disorder, with as many as 2% developing the condition in their lifetime.

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This group also is more likely than others to experience the chronic and more severe symptoms associated with sarcoidosis. In fact, African Americans with this disease have a 13 times higher mortality rate than do whites.

Yet, these patients face significant barriers when accessing treatment and are often diagnosed later than their counterparts of other races. Additionally, enrollment in clinical trials by African Americans is limited, which also prevents researchers from knowing how well a specific treatment will work on this patient population.

The FSR has been working to raise awareness and overcome these disparities. In fact, one of foundation’s newest initiatives, the African American Women & Sarcoidosis National Campaign, was launched in October to bring awareness to how this group is disproportionately affected by the disease and to educate people living with the disorder.

The campaign was created with insight from the foundation’s 15-member Women of Color (WOC) Patient Advisory Committee.

The recently awarded funds will be used by the FSR to help reduce the health disparities experienced by African Americans with sarcoidosis, with the foundation exploring ways to overcome barriers to diagnosis and treatment, and developing possible solutions to improve care and patient outcomes.

The Rare as One Project is dedicated to helping communities in seeking cures for the nearly 7,000 rare diseases that affect 400 million people across the globe.

FSR was one of 20 patient-led, rare disease advocacy organizations that received funds in this second grant cycle. The teams will work alongside scientists and clinicians to advance research in their dedicated diseases. These 20 organizations join the initial 30 organizations awarded $450,000 grants in February 2020 as part of the Rare as One Project.

The project supports patient-led organizations that seek to improve the lives of people affected by rare diseases. The overarching initiative was launched in 2015 by Facebook found Mark Zuckerberg and his wife, Priscilla Chan, who serve as co-CEOs.

“FSR is very grateful for this opportunity to help advance our mission and honored to join CZI’s Rare as One network of grantee organizations to help strengthen and empower the rare disease community,” McGowan added.