Foundation for Sarcoidosis Research Partners to Host 30 Volunteer Patient Leaders at Unique In-Person Training at Cleveland Clinic

2024-03-01

CHICAGO, March 01, 2024 (GLOBE NEWSWIRE) -- 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 States at Cleveland Clinic, the FSR Global Sarcoidosis Clinic Alliance (FSR-GSCA) Founding Member. This inaugural in-person training of FSR-GSCA Volunteer Patient Leaders has been structured to empower volunteer patient leaders with the skills, knowledge, and connections necessary to make a meaningful impact in the fight against sarcoidosis.

This program offers patient volunteer leaders a unique opportunity to learn directly from world-renowned sarcoidosis experts, as well as through direct, hands-on learning experiences while exploring Cleveland Clinic’s facilities and receive training on how to tell an effective story to drive change.

FSR-GSCA is a member program consisting of clinics, hospitals, individual providers, patients, and caregivers committed to finding a cure for sarcoidosis and offering evidence-based, patient-centric care for those living with sarcoidosis. FSR-GSCA Volunteer Leaders representing 18 states and 20 clinics will come together March 8-10, 2024, at Cleveland Clinic, Cleveland, OH, to connect, learn, and grow in their commitment to making a difference in the lives of those affected by sarcoidosis.

“FSR is proud to partner with Cleveland Clinic for this extraordinary in-person training event. This unique program will result in significant stride to improve the care and patient outcomes for those impacted by sarcoidosis nationwide,” said Mary McGowan, Chief Executive Officer of FSR. “The FSR Patient Volunteer Leaders will be the boots on the ground in their local communities and the driving force behind increased awareness and support that will be the catalyst for improved patient outcomes for all impacted by sarcoidosis.”

"Sarcoidosis is a complex and often misdiagnosed, and misunderstood condition. Cleveland Clinic is a proud member of the FSR Global Sarcoidosis Clinic Alliance and is honored to hold this training event in collaboration with FSR. We recognize the importance of building a strong support system for those living with the condition,” said Dr. Manny Ribeiro, Cleveland Clinic pulmonologist who specializes in sarcoidosis. “We believe that informed patient volunteer leaders are the beacon of hope for all individuals impacted by sarcoidosis.”

FSR would like to extend an invitation to the media to join this extraordinary event. For media inquiries or more information about the FSR-GSCA Patient Volunteer Leaders’ Training Event, please contact cathi@stopsarcoidosis.org.

For more information about FSR and the Global Sarcoidosis Clinic Alliance, please visit https://www.stopsarcoidosis.org/global-clinic-alliance/.

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.

About Foundation for Sarcoidosis Research 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 $6.5 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.

Contact:

Cathi Davis

FSR Sr. Manager of Marketing and Communications

Cathi@stopsarcoidosis.org