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Sarcoidosis Research Foundation Launches Groundbreaking Global Rare Disease Initiative

The Global Alliance of Sarcoidosis Clinics FSR brings together sarcoidosis clinics and hospitals committed to finding a cure and providing evidence-based, patient-centered care for people with sarcoidosis. Alliance members will benefit from innovative resources, sustainable programs and tools to accelerate treatment, research and the continuum of patient care.

“FSR believes in the power of many to join forces for truly breakthrough results in sarcoidosis care and research. The FSR Global Alliance of Sarcoidosis Clinics will ensure that every patient in every community around the world has access to education, care and support, leading to better patient outcomes,” says Mary McGowan, CEO of the FSR. “We are honored to already be collaborating with 22 esteemed founding members of this groundbreaking rare disease initiative that will lead to extraordinary results. The quality of life of approximately 1.2 million sarcoidosis patients affected by sarcoidosis worldwide depends on true global collaboration and that is exactly what this Alliance is about.”

Diane DriscollFSR’s Global Head of Clinical Engagement, notes, “We continue to seek founding members through September 30and we invite all sarcoidosis clinics to learn more by registering for the webinar at July 21, 2022at 9:00 a.m. ET.” To register, go to https://bit.ly/3y6FjcW.

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

Founding members of the FSR Global Sarcoidosis Clinic Alliance to date: Beaumont Health Royal Oak Interstitial Lung Disease Program, Cleveland Clinic Sarcoidosis Center of Excellence, Emory Clinic, Advanced Services Inova Health System Lung Diseases, Johns Hopkins Sarcoidosis Clinic, Jane and Leonard Korman Respiratory Institute Sarcoidosis Program at Thomas Jefferson Universitythe Susan Pearlstine Sarcoidosis Center of Excellence in Medical University of South CarolinaMount Sinai Medical Center, National Jewish Health, Spectrum Health Sarcoidosis Clinic, Stanford Medicine, Tampa General Hospital/University of South FloridaUniversity of Alabama Multidisciplinary Sarcoidosis Center of Excellence, UCLA State of the Art Sarcoidosis Clinic, University of Florida Jacksonville College of Medicine, UI Health Center for Advanced Translational Research (STAR) in Bernie Mac Sarcoidosis, University of Kentucky Sarcoidosis Clinic, University of Mississippi Medical CenterSarcoidosis Center of Excellence at the University of Texas Southwestern Medical Center, UT Health Houston/Memorial Hermann, University of VirginiaMultidisciplinary Sarcoidosis Clinic VCU, 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. About 5-10% of all diagnosed patients will have advanced sarcoidosis. Sarcoidosis affects the lungs in about 90% of cases, but it can affect almost any organ in the body, and in more advanced or chronic cases it can affect multiple organs at the same time. Despite growing 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 United States compared to any other group. They are more likely to have chronic, severe symptoms and higher hospitalization rates than Caucasians and more than double those of African American men.

About the Sarcoidosis Research Foundation

Founded in 2000, the Foundation for Sarcoidosis Research (FSR) is the leading international non-profit organization dedicated to finding a cure for sarcoidosis and improving care for patients with sarcoidosis through research. , education and support. Since its creation, FSR has encouraged more than $6 million in sarcoidosis-specific research efforts and has worked diligently to provide resources to thousands of people. For more information and to join our community, visit www.stopsarcoidosis.org.

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cathi daviscommunications manager

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SOURCE Foundation for Sarcoidosis Research