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FSR Updates

Stay up-to-date on FSR’s latest activities and learn about the ways that FSR is driving progress and accelerating research towards a cure.

FSR launched the Ignore No More: ACTe Now! Campaign (Advance Clinical Trials for Equity in Sarcoidosis) to address the underrepresentation of Black Americans in clinical trials. As part of the campaign, FSR conducted the first of its kind, IRB-approved national patient survey for Black Americans to better understand the challenges and experiences Black Americans with sarcoidosis face as it pertains to clinical trials and their disease journeys. FSR also conducted a Key Opinion Leaders Thought Workshop (KOL) and Patient Focus Group to explore the findings in greater depth and to identify recommendations for how to improve clinical trial access and overall care of Black sarcoidosis patients.

Some recommendations that emerged include building a blueprint for clinical trial design that increases access and supports diversity, clinical trial navigation and support specifically targeted for Black patients, and educational toolkits to better educate patients and physicians about trial opportunities and engagement. Though this campaign was specific to Black Americans with sarcoidosis the learnings are relevant to improving access to clinical trials for all Black Americans.

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FSR Blog

FSR Launches the Coalition for Clinical Trial Equity to Address Barriers Faced by Black Patients

May 20, 2024

The Foundation for Sarcoidosis Research (FSR), the leading international organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients, takesLearn More

FSR and Walgreens Unite in Alabama to Boost Sarcoidosis Awareness and Spring Vaccine Education

April 17, 2024

Beginning April 15th, Walgreens, a pharmacy and retail leader who plays a critical role in the U.S. healthcare system by providing a wide rangeLearn More

FSR Launches Say Sarcoidosis Campaign for April’s Awareness Month

April 2, 2024

The Foundation for Sarcoidosis Research (FSR), the leading international organization dedicated to finding a cure for sarcoidosis and improving care for patients, is proudLearn More

26 Patient Volunteer Leaders Attend the Foundation for Sarcoidosis Research Global Sarcoidosis Clinic Alliance Volunteer Patient Leadership Advanced Training Conference held at Cleveland Clinic

March 27, 2024

26 Patient Volunteer Leaders representing 16 states and 17 hospitals joined the Foundation for Sarcoidosis Research (FSR) at the inaugural FSR Global Sarcoidosis ClinicLearn More

FSR to Host 30 Volunteer Patient Leaders at Unique In-Person Training at Cleveland Clinic

March 5, 2024

The Foundation for Sarcoidosis Research (FSR) is honored to host its inaugural in-person training of FSR-GSCA Volunteer Patient Leaders from around the United StatesLearn More

6 Things You Should Know About Clinical Trials

February 28, 2024

Are you thinking about participating in a clinical trial? Here are 6 things you should know! Clinical trials can be an intimidating and unexploredLearn More

Tricha Shivas Promoted to Chief of Staff and Strategy at Foundation for Sarcoidosis Research

February 19, 2024

The Foundation for Sarcoidosis Research (FSR) proudly announces the promotion of Tricha Shivas to Chief of Staff and Strategy. Ms. Shivas, who joined FSRLearn More

Advocating for Improved Access to Oxygen

February 13, 2024

The Foundation for Sarcoidosis Research is part of a 27-member coalition dedicated to improving access to supplemental oxygen for all in need. Chasta Posey,Learn More

FSR Awards $100,000 in Support of Cardiac Sarcoidosis

December 19, 2023

The Foundation for Sarcoidosis Research (FSR) announces $100,000 in funding for support of research aimed at improving diagnosis, management, and treatment of cardiac sarcoidosis. Learn More

FSR Announces 3 New Members to the 40 Member FSR Global Sarcoidosis Clinic Alliance through its FSR-GSCA Capacity Building Grants

November 2, 2023

Foundation for Sarcoidosis Research (FSR) announces three clinics that have been selected as members of FSR Global Sarcoidosis Clinic Alliance (FSR-GSCA) – a groundbreaking initiativeLearn More

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