CHICAGO, Feb. 23, 2026 (GLOBE NEWSWIRE) — The Foundation for Sarcoidosis Research (FSR) has been named a 2025 RareVoice Awards recipient by EveryLife Foundation for Rare Diseases, earning national recognition for Federal Advocacy by a Patient or Organization. The award honors FSR’s leadership in securing a clarification from the U.S. Department of Labor under the Family and Medical Leave Act (FMLA) that provides job-protected leave for clinical trial participants and their family caregiver. This policy milestone affects an estimated 60 million eligible employees across the United States, strengthening access to and retention in clinical trials for people living with rare and chronic diseases and their families.
The RareVoice Awards recognize exceptional advocates who elevate the patient voice and drive meaningful policy change at the state and federal levels. Awardees are selected from nominations submitted by patients, caregivers, advocates, and organizations across the rare disease community.
“Advocacy means standing in the gap until systems change and patients are seen, heard, and served”, said Mary McGowan, President and CEO of FSR. “This wonderful award is not just an acknowledgment of our work – it’s a celebration of the patients, caregivers, and partners who are driving progress. It reminds us that advocacy is most powerful when it’s collective, and that the change we’re making together is real and transformational.”
FSR’s advocacy efforts are deeply connected to its work to expand access to clinical trials. Through the Coalition to Transform Clinical Trial Engagement, an initiative launched by FSR, the organization partners with patient groups, industry leaders, clinicians, and advocates across chronic conditions to address barriers to participation. As part of these efforts, the coalition works to address workplace barriers through its Champions for Change – PTO Initiative, which partners with employers to provide paid time off for clinical trials participation. The coalition focuses on increasing representation, dismantling structural obstacles, and creating a more inclusive research environment so that every patient has a fair opportunity to access trials and care.
February is recognized as Rare Disease Month, a time to raise awareness and advance policy solutions for the more than 30 million Americans living with rare diseases. As part of these efforts, Rare Disease Week on Capitol Hill will take place the last week of February, bringing together patients, caregivers, advocates, researchers, and policymakers from across the country. The 2025 RareVoice Awardees will be featured during Rare Disease Week on Capitol Hill, including at the RareVoice Success Panel, where awardees will share their advocacy journeys and policy impact. Mary McGowan will join fellow honorees for the panel discussion on Tuesday, February 24th from 2:15–3:15 p.m. at the Ronald Reagan Building and International Trade Center.
Media inquiries are encouraged to contact FSR directly.
For more information about FSR’s advocacy efforts, the Coalition to Transform Clinical Trial Engagement and the Champions for Change – PTO Initiative and members, visit ignorenomore.org.
About Sarcoidosis
Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease of unknown cause characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. Sarcoidosis affects the lungs in approximately 90% of cases, but it can affect almost any organ in the body and in more advanced or chronic cases can impact multiple organs at the same time. Despite increasing advances in research, sarcoidosis remains difficult to diagnose with limited treatment options and no known cure.
About Foundation for Sarcoidosis Research
Established in 2000, Foundation for Sarcoidosis Research (FSR), is the leading international non-profit organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients through research, education, and support. Since inception, FSR has fostered over $10 million in sarcoidosis-specific research efforts and has worked diligently to provide resources to thousands. For more information and to join our community, visit www.stopsarcoidosis.org.
For more information or to schedule an interview, please reach out to:
Cathi Davis, FSR Communications and Marketing Director
312-341-0500, [email protected]
A photo accompanying this announcement is available at https://www.globenewswire.com/NewsRoom/AttachmentNg/2ccd601c-a26a-4c37-bfb5-70c7e901c25e
