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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SUNY Upstate Medical University Auyon Ghosh MD, MPH, to be presented with $50,000 Partnership Research Grant from American Thoracic Society and Foundation for Sarcoidosis Research
SUNY Upstate Medical University Auyon Ghosh MD, MPH, to be presented with $50,000 Partnership Research Grant from American Thoracic Society and Foundation for SarcoidosisLearn More
Questions to Ask Your Sarcoidosis Care Provider
You may have a lot of questions about sarcoidosis, especially if you are newly diagnosed. And other times, you may not know whatLearn More
Distinctive: Discussions of Disparities & Diversity in Sarcoidosis
Distinctive: Discussions of Disparities & Diversity in Sarcoidosis Addressing Disparities and Diversity in Care of Patients Living with Sarcoidosis to Improve Diagnosis, Treatment, andLearn More
Challenges of Sarcoidosis and Its Management: Summary
In September 2021, an article entitled “Challenges of Sarcoidosis and Its Management” (Drent et al., 2021) was published in the prestigious New England JournalLearn More
FSR Welcomes New Global Head of Clinical Engagement!
The Foundation for Sarcoidosis Research (FSR)’s team is growing to better support the needs identified by the sarcoidosis community! FSR is pleased to announceLearn More
FSR Virtual Sarcoidosis Support Group
FSR Sarcoidosis Support Group In response to feedback received and a growing need to support patients where they are, FSR has launched an onlineLearn More
Addressing Barriers to Care to Improve the Lives of Those with Sarcoidosis
Addressing Barriers to Care to Improve the Lives of Those with Sarcoidosis: Why I Support FSR’s African American Women and Sarcoidosis Campaign ILearn More
Act Now to Protect Drug Development
Act Now to Protect Drug Development. As part of the budgeting process, Congress is discussing cutting back the Orphan Drug Tax Credit forLearn More
It’s All About the Journey
I have sarcoidosis and am a Patient Advocate. In the Fall of 2020, I was diagnosed with neurosarcoidosis. The biggest question I struggled withLearn More
FSR Update 2022: Omicron, Vaccines, and Boosters
What to know about Omicron, the vaccines, the boosters, and staying safe The Omicron variant of the COVID-19 virus is now the dominant variant inLearn More
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