CHICAGO, March 27, 2024 (GLOBE NEWSWIRE) — 26 Patient Volunteer Leaders representing 16 states and 17 hospitals joined the Foundation for Sarcoidosis Research (FSR) at the inaugural FSR Global Sarcoidosis Clinic Alliance (FSR-GSCA) Volunteer Patient Leadership Advanced Training Conference held at Cleveland Clinic. This groundbreaking event, which took place from March 8th to March 10th, 2024, brought together passionate Volunteer Leaders from across the nation dedicated to advancing awareness, support, and research for sarcoidosis.
The FSR-GSCA Volunteer Patient Leadership Advanced Training Conference marked a pivotal moment in the fight against sarcoidosis, a rare disease characterized by the growth of inflammatory cells in various organs of the body. Hosted at Cleveland Clinic, renowned for its expertise in medical research and patient care, the conference and private tour of Cleveland Clinic’s sarcoidosis clinic provided an invaluable platform for patients, caregivers, healthcare professionals, and researchers to collaborate and drive progress in the field.
Throughout the three-day event, attendees participated in a comprehensive program featuring educational sessions, workshops, and interactive discussions led by leading experts in sarcoidosis research and advocacy. From understanding the latest advancements in treatment options, to learning effective advocacy and story-telling strategies, participants gained invaluable knowledge and skills to make a meaningful impact within their communities.
“We are immensely proud of the success of the FSR-GSCA Volunteer Patient Leadership Training Conference,” said Mary McGowan, Chief Executive Officer of FSR. “This training exemplifies our commitment to empowering individuals affected by sarcoidosis to become advocates for themselves and others. By fostering collaboration and knowledge sharing, we are driving progress towards improved outcomes and ultimately, a cure for this complex disease.”
“As a rare disease, sarcoidosis is underfunded and under-resourced. The advocacy training received by the FSR volunteer leaders at this training will change the face of the disease. These volunteer leaders are the emissaries for progress,” said Dr. Daniel Culver, Chair of the Division of Pulmonary Medicine at Cleveland Clinic, a Founding Member of the FSR Global Sarcoidosis Clinic Alliance.
In addition to educational sessions, the conference provided a supportive environment for attendees to connect, share personal experiences, and forge lasting relationships with others who understand the challenges of living with sarcoidosis. These connections are invaluable in fostering a sense of community and resilience among those affected by the disease.
“To say it was an honor to be in everyone’s presence is an understatement! I can’t wait to help our cause,” said Andrea Maione, Volunteer Leader from Mount Sinai.
“Just from the one day I felt enriched and inspired by a number of people that I met,” said Susan Reyes, Volunteer Leader from Hospital for Special Surgery.
The success of the FSR-GSCA Volunteer Patient Leadership Training would not have been possible without the generous support of Cleveland Clinic. Their dedication and commitment to the sarcoidosis community are instrumental in advancing FSR’s mission to improve the lives of individuals impacted by sarcoidosis.
For more information about the Foundation for Sarcoidosis Research Global Sarcoidosis Clinic Alliance, visit www.stopsarcoidosis.org.
About the Foundation for Sarcoidosis Research:
The Foundation for Sarcoidosis Research (FSR) is the leading international nonprofit dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients. Since its establishment in 2000, FSR has fostered over $6.5 million in sarcoidosis-specific research efforts.
Media contact: Cathi Davis, FSR Senior Manager of Marketing and Communications
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