Stay up-to-date on the Foundation for Sarcoidosis (FSR)'s latest activities and learn about the ways that FSR is driving progress and accelerating research towards a cure.
FSR Reports
FSR has undertaken a comprehensive process to develop a new Research Agenda that will guide its funding priorities and strategic direction. This initiative comes at a critical time, as sarcoidosis affects approximately 1.2 million people worldwide, and approximately 175,000-200,000 in the United States. Sarcoidosis was first discovered over 150 years ago and yet little progress has been made toward a significant breakthrough in the scientific understanding of the disease and the therapeutic options.
To address this concern, FSR has endeavored to create a robust Research Agenda aimed at addressing gaps in sarcoidosis research. This Research Agenda represents a strategic and measurable approach toward the achievement of our mission to accelerate progress toward improved treatments and a possible cure for sarcoidosis.
On October 28, 2024, the Foundation for Sarcoidosis Research hosted the Externally-Led Patient Focused Drug Development (EL-PFDD) Meeting—an interactive, virtual event where patients and caregivers shared their experiences, unmet needs, and treatment priorities.
The resulting 50-page Voice of the Patient Report captures these insights, reflecting the real-world impact of sarcoidosis and guiding future research and therapy development. This report amplifies the voices of patients and caregivers, providing valuable perspective for healthcare providers, researchers, and drug developers to ensure that patient needs remain at the center of progress.
FSR is excited to announce the release of The FSR-SARC Patient Registry Report (FSR Registry Report), “Living with Sarcoidosis – Insights from the FSR-SARC Patient Registry (FSR Registry)."
This global, patient-reported outcomes program incorporates dates from 2015-2025. For a decade, the FSR Registry has gathered crucial information from individuals living with sarcoidosis around the world. This online patient registry is helping researchers uncover patterns in the disease and identify ways to improve care and quality of life.
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FSR Blog
Blog: My Journey with Neurosarcoidosis
My journey with neurosarcoidosis began on May 5, 2013, when I woke up in the morning with the worst headache of my life, lightLearn More
Sarcoidosis Test Aims to Speed, Simplify Diagnostic Process
Sarcoidosis is difficult to diagnose for a variety of reasons, Mary McGowan, CEO of the Foundation for Sarcoidosis Research, told Diagnostics World. For one,Learn More
FSR Launches the Coalition for Clinical Trial Equity to Address Barriers Faced by Black Patients
The Foundation for Sarcoidosis Research (FSR), the leading international organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients, takesLearn More
FSR and Walgreens Unite in Alabama to Boost Sarcoidosis Awareness and Spring Vaccine Education
Beginning April 15th, Walgreens, a pharmacy and retail leader who plays a critical role in the U.S. healthcare system by providing a wide rangeLearn More
FSR Launches Say Sarcoidosis Campaign for April’s Awareness Month
The Foundation for Sarcoidosis Research (FSR), the leading international organization dedicated to finding a cure for sarcoidosis and improving care for patients, is proudLearn More
26 Patient Volunteer Leaders Attend the Foundation for Sarcoidosis Research Global Sarcoidosis Clinic Alliance Volunteer Patient Leadership Advanced Training Conference held at Cleveland Clinic
26 Patient Volunteer Leaders representing 16 states and 17 hospitals joined the Foundation for Sarcoidosis Research (FSR) at the inaugural FSR Global Sarcoidosis ClinicLearn More
FSR to Host 30 Volunteer Patient Leaders at Unique In-Person Training at Cleveland Clinic
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 StatesLearn More
6 Things You Should Know About Clinical Trials
Are you thinking about participating in a clinical trial? Here are 6 things you should know! Clinical trials can be an intimidating and unexploredLearn More
Tricha Shivas Promoted to Chief of Staff and Strategy at Foundation for Sarcoidosis Research
The Foundation for Sarcoidosis Research (FSR) proudly announces the promotion of Tricha Shivas to Chief of Staff and Strategy. Ms. Shivas, who joined FSRLearn More
Advocating for Improved Access to Oxygen
The Foundation for Sarcoidosis Research is part of a 27-member coalition dedicated to improving access to supplemental oxygen for all in need. Chasta Posey,Learn More
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