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Announcement coincides with Foundation's 25th anniversary and recent FMLA clarification supporting clinical trial access
CHICAGO, April 30, 2025 (GLOBE NEWSWIRE) -- The Foundation for Sarcoidosis Research (FSR) today celebrated the official recognition of April as Sarcoidosis Awareness Month in the U.S. House of Representatives, a meaningful milestone that coincides with the organization's 25th anniversary year. In remarks entered into the Congressional Record on April 9, Rep. Danny K. Davis (IL-7) called attention to the growing need for research, awareness, and access to care for the estimated 1.2 million people worldwide living with sarcoidosis.
"Congressional recognition of Sarcoidosis Awareness Month is a powerful signal that this disease, and the people it affects, can no longer be overlooked,” said Mary McGowan, CEO of FSR. "Too many patients still go years without a diagnosis, too many families are left with unanswered questions, and too many providers lack the tools they need to offer proper care. This month is about changing that through visibility, education, and action.”
Sarcoidosis is a complex inflammatory disease caused by an overactive immune response that leads to the formation of granulomas-small clusters of inflammatory cells-in one or more organs. It most commonly affects the lungs (in about 90% of cases) but can also impact the heart, brain, eyes, skin, and other vital systems. It is often chronic, difficult to diagnose, and currently has no cure.
"I am honored to lead the efforts, along with the Foundation for Sarcoidosis Research (FSR), in securing Congressional Recognition of Sarcoidosis Awareness Month,” said Representative Danny K. Davis.
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In addition to celebrating the formal designation of Sarcoidosis Awareness Month, Rep. Davis also acknowledged a recent regulatory win for patients with chronic and rare diseases. Following outreach from FSR and allied stakeholders, the U.S. Department of Labor issued clarification confirming that participation in clinical trials is a permissible use of leave under the Family and Medical Leave Act (FMLA)-a critical step in ensuring sarcoidosis patients and caregivers have protected access to potentially life-saving research. "I have been proud to work alongside FSR and my Congressional colleagues on the important effort in securing clarity from the Department of Labor that guarantees job protection under FMLA for all Americans who wish to enroll in clinical trials,” said Representative Danny K. Davis.
Since its founding in 2000, FSR has invested more than $7 million in academic research, built one of the world's largest sarcoidosis clinician networks, and helped lead major policy and advocacy efforts to protect and empower patients.
Throughout April, FSR is continuing its Sarcoidosis Awareness Month campaign by highlighting patient voices, amplifying educational tools, and driving momentum toward improved health equity and outcomes for all those affected by sarcoidosis.
To learn more or get involved, visit www.stopsarcoidosis.org.
About Sarcoidosis
Sarcoidosis is a rare inflammatory disease characterized by granulomas-tiny clumps of inflammatory cells-that can form in one or more organs. 90% of patients living with sarcoidosis have lung involvement. Despite advances in research, sarcoidosis remains challenging to diagnose, with limited treatment options and no known cure. Approximately 175,000 people live with sarcoidosis in the United States.
About the Foundation for Sarcoidosis Research
The Foundation for Sarcoidosis Research (FSR) is the leading international organization dedicated to finding a cure for sarcoidosis and improving care for those living with the disease through research, education, and support. For more information about FSR and its community programs, visit: www.stopsarcoidosis.org.
Media Contact:
Cathi Davis
Director of Communications and Marketing
Foundation for Sarcoidosis Research
312-341-0500
