Foundation for Sarcoidosis Research Launches Groundbreaking Global Rare Disease Initiative

admin June 22, 2022

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CHICAGO, June 21, 2022 /PRNewswire/ — Foundation for Sarcoidosis Research (FSR) announces the launch of the FSR Global Sarcoidosis Clinic Alliance, a groundbreaking initiative that will have a worldwide impact on advancing sarcoidosis research and improving the lives of those with sarcoidosis through patient and clinician education, engagement, and support.

FSR Global Sarcoidosis Clinic Alliance will ensure every patient in every community across the world has access to care.

The FSR Global Sarcoidosis Clinic Alliance brings together sarcoidosis clinics and hospitals committed to finding a cure and offering evidence-based, patient-centric care for those living with sarcoidosis. Alliance members will benefit from innovative resources, sustainable programming, and tools to accelerate treatment, research, and the continuum of patient care.

“FSR believes in the power of many to join forces for true game-changing results in sarcoidosis care and research. The FSR Global Sarcoidosis Clinic Alliance will ensure every patient in every community across the world has access to education, care, and support, leading to improved patient outcomes,” says Mary McGowan, FSR CEO. “We are honored to already be collaborating with 22 esteemed founding members of this groundbreaking rare disease initiative which will lead to extraordinary results. The quality of life of approximately 1.2 million sarcoidosis patients impacted by sarcoidosis world-wide depends on a true global collaborative and that’s exactly what this Alliance is all about.”

Diane Driscoll, FSR Global Head of Clinical Engagement, notes, “We are continuing to seek founding members through September 30, and we invite all sarcoidosis clinics to learn more by registering for the webinar on July 21, 2022, at 9:00am ET.” To register, visit https://bit.ly/3y6FjcW.

As part of FSR’s grant through the Rare As One program, provided by the Chan Zuckerberg Initiative, the FSR Global Sarcoidosis Clinic Alliance membership will be provided to a select number of clinics that serve a high percentage of underserved communities. “We remain committed to improving the health and quality of life of people living with sarcoidosis in underserved communities,” says McGowan.

FSR Global Sarcoidosis Clinic Alliance Founding Members to date: Beaumont Health’s Royal Oak Interstitial Lung Disease Program, Cleveland Clinic Sarcoidosis Center of Excellence, The Emory Clinic, Inova Health System’s Advanced Lung Disease Services, Johns Hopkins Sarcoidosis Clinic, The Jane and Leonard Korman Respiratory Institute Sarcoidosis Program at Thomas Jefferson University, The Susan Pearlstine Sarcoidosis Center of Excellence at the Medical University of South Carolina, Mount Sinai Medical Center, National Jewish Health, Spectrum Health Sarcoidosis Clinic, Stanford Medicine, Tampa General Hospital/University of South Florida, University of Alabama Multidisciplinary Sarcoidosis Center of Excellence, UCLA State of the Art Sarcoidosis Clinic, University of Florida College of Medicine Jacksonville, UI Health Bernie Mac Sarcoidosis Translational Advanced Research Center (STAR), University of Kentucky Sarcoidosis Clinic, University of Mississippi Medical Center, Sarcoidosis Center of Excellence at the University of Texas Southwestern Medical Center, UT Health Houston/Memorial Hermann, University of Virginia, VCU Multidisciplinary Sarcoidosis Clinic, Mount-Sinai-National Jewish Health and Jane and Leonard Korman Respiratory Institute-Jefferson Health-National Jewish Health Partnership.

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. Approximately 5-10% of all patients diagnosed will suffer from advanced sarcoidosis. 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. African American women experience the highest incidence of sarcoidosis in the US compared to any other group. They are more likely to experience chronic and severe symptoms and higher hospitalization rates than Caucasians and more than double that of African American men.

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 $6 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, Communications Manager

312-341-0500 ext 106, cathi@stopsarcoidosis.org