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
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
FSR Awards $100,000 in Support of Cardiac Sarcoidosis
The Foundation for Sarcoidosis Research (FSR) announces $100,000 in funding for support of research aimed at improving diagnosis, management, and treatment of cardiac sarcoidosis. Learn More
FSR Announces 3 New Members to the 40 Member FSR Global Sarcoidosis Clinic Alliance through its FSR-GSCA Capacity Building Grants
Foundation for Sarcoidosis Research (FSR) announces three clinics that have been selected as members of FSR Global Sarcoidosis Clinic Alliance (FSR-GSCA) – a groundbreaking initiativeLearn More
The importance of finding your sarcoidosis community
Why is finding your community important? After a diagnosis that changes your life, you need people who understand the journey you are about toLearn More
FSR partners with Walgreens stores in Alabama to raise awareness of sarcoidosis and the importance of all impacted by heart and lung disease to get vaccinated
Beginning September 16th, Walgreens, a pharmacy and retail leader who plays a critical role in the U.S. healthcare system by providing a wide rangeLearn More
FSR Graduates Second Class of New Volunteers from 11 States to Raise Awareness and Improve Clinical Outcomes for Those Living with Sarcoidosis
Foundation for Sarcoidosis Research (FSR), the leading international nonprofit organization dedicated to finding a cure and improving care for sarcoidosis patients, conducted a two-dayLearn More
Living with ILD: My Sarcoidosis Journey
My journey with Interstitial Lung Disease (ILD) started about 15 years ago, although I did not know it at the time, nor did theLearn More
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