RARE Daily

Foundation for Sarcoidosis Research Launches Global Rare Disease Initiative

June 24, 2022

The Foundation for Sarcoidosis Research said it has launched the FSR Global Sarcoidosis Clinic Alliance, an initiative intended to advance sarcoidosis research and improve the lives of people with sarcoidosis through patient and clinician education, engagement, and support.

Photo: Mary McGowan, CEO of Foundation for Sarcoidosis Research

Sarcoidosis 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 to 10 percent of all patients diagnosed will suffer from advanced sarcoidosis. Sarcoidosis affects the lungs in approximately 90 percent 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 U.S. 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.

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 people living with sarcoidosis. Alliance members will benefit from resources, sustainable programming, and tools to accelerate treatment, research, and the continuum of patient care. The organization it is collaborating with 22 founding members globally.

“FSR believes in the power of many to join forces for true game-changing results in sarcoidosis care and research,” said Mary McGowan, CEO of Foundation for Sarcoidosis 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.”

As part of FSR’s grant provided by the Chan Zuckerberg Initiative’s Rare As One program, 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.

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