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
Ten Years with Sarcoidosis — Still Riding, Still Breathing
“Ten years ago, I heard a word that would quietly change the course of my life: sarcoidosis. At the time, I had no ideaLearn More
A Kaleidoscope Inspires FSR’s “See Sarcoidosis” Awareness Month Campaign
Often described as a “snowflake disease,” sarcoidosis can affect every patient differently, making it difficult to diagnose, treat, and even recognize. This April, theLearn More
FSR Receives 2025 RareVoice Award for Federal Advocacy
The Foundation for Sarcoidosis Research (FSR) has been named a 2025 RareVoice Awards recipient by EveryLife Foundation for Rare Diseases, earning national recognition for Federal Advocacy byLearn More
FSR Announces $400,000 Investment in New Round of Cardiac and Pilot Grant Awards
The Foundation for Sarcoidosis Research (FSR) has awarded four grants in the amount of $100,000 each to Dr. Christen Vagts from the University ofLearn More
FSR Announces New Members to its Expanding Global Sarcoidosis Clinic Alliance, Including Its First International Member
The Foundation for Sarcoidosis Research (FSR) proudly announces the addition of seven new institutions to its growing FSR Global Sarcoidosis Clinic Alliance (FSR-GSCA): University ofLearn More
What is a Donor-Advised Fund?
Foundation for Sarcoidosis Research (FSR) receives funding and gifts from many sources. We have seen an increase in the number of inquiries about givingLearn More
Unlocking the Future of Sarcoidosis Research and Care: Key Takeaways from the FSR Biomarker Summit
Sarcoidosis is a complex disease that affects multiple organs and varies widely from patient to patient. To address many of the existing unanswered questionsLearn More
FSR Convenes Global Leaders for Landmark Clinic Alliance Meeting and Sarcoidosis Biomarker Summit
The Foundation for Sarcoidosis Research (FSR) brought together more than 40 leading clinicians and researchers from around the world for two landmark events: theLearn More
A Rare Type with a Rare Disease
In 1997, after several months of dealing with confusing symptoms, I was diagnosed with sarcoidosis in my lungs and lymph nodes. The surgeon whoLearn More
In Memory of Bob Gross
It is with deep sadness that we share the passing of our dear friend and longtime volunteer, Bob Gross. For many years, Bob wasLearn More
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