FSR’s Sarcoidosis Clinic Alliance to Boost Care, Research

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by Patricia Inácio, PhD |

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The Foundation for Sarcoidosis Research (FSR) has launched the FSR Global Sarcoidosis Clinic Alliance, a hub of clinics and hospitals around the world to advance care and research in sarcoidosis.

Through engagement and education of both patients and clinicians, the initiative seeks to improve the lives of people with sarcoidosis.

“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,” Mary McGowan, FSR’s CEO, said in a press release.

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The Alliance intends to ensure that sarcoidosis patients in every community have access to relevant information, including clinical trials and patient support services. While clinicians will benefit from networking events and forums to help share knowledge toward better care, research will be accelerated through FSR’s global assets and funding. The Alliance also aims to boost business outcomes through both patient benchmarks and community health improvement services.​

Memberships to the Alliance will be open to clinics serving a high percentage of underserved communities. This is made possible by an FSR grant provided by the Chan Zuckerberg Initiative’s Rare as One Project.

“We remain committed to improving the health and quality of life of people living with sarcoidosis in underserved communities,” said McGowan.

The number of Alliance founding members is currently 22, but the FSR is still looking for more until Sept. 30. More details will be disclosed in a free, one-hour webinar scheduled for 9 a.m. ET July 21.

“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,” McGowan added.

Current founding members of the Alliance include Cleveland Clinic Sarcoidosis Center of Excellence in Ohio, the Johns Hopkins Sarcoidosis Clinic in Maryland, Mount Sinai Medical Center, Stanford Medicine in California, UCLA State of the Art Sarcoidosis Clinic, also in California, and National Jewish Health in Colorado. A complete list of founding Alliance members is available in the press release.