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FSR Updates

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.

Posters and Abstracts

Partner Joint Publications

Toolkits

White Papers

Annual Updates

Press Releases

FSR Blog

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

September 15, 2023

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

September 14, 2023

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

September 13, 2023

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

Learn the Facts About Interstitial Lung Disease on ILD Day, Sept. 13

September 5, 2023

With more than 250,000 Americans living with interstitial lung disease (ILD) and pulmonary fibrosis (PF), nine organizations are joining forces to present the thirdLearn More

The Time is NOW for Sarcoidosis

August 17, 2023

“Everything that the foundation (FSR) is doing is moving the needle forward, and so that makes me very hopeful.”  – Jeryl Prescott Gallien, SarcoidosisLearn More

FSR Awards Dr. Christen Vagts, University of Illinois Hospital and Clinic, Fellowship Grant for 2023–2025

July 26, 2023

The Foundation for Sarcoidosis Research (FSR) is pleased to announce that the FSR Sarcoidosis Research Fellowship for 2023-2025 is being awarded to Dr. ChristenLearn More

FSR Appoints Two New Members, Calvin Harris Jr., CPA and Joel D. Rosen, Esq., to Board of Directors

July 13, 2023

The Foundation for Sarcoidosis Research (FSR) is pleased to announce the appointment of Calvin Harris Jr., CPA and Joel D. Rosen, Esq. to theLearn More

FSR Releases White Paper and Hosts Congressional Briefing on Advancing Clinical Trial Equity for Black Patients with Sarcoidosis

May 22, 2023

Foundation for Sarcoidosis Research (FSR), the leading international organization dedicated to elevating research, raising awareness and providing support for individuals affected by sarcoidosis, isLearn More

aTyr Spotlight: Accelerating Sarcoidosis Research and Supporting the Sarcoidosis Community

April 26, 2023

Recently, we asked our dedicated and generous Sarcoidosis Awareness Campaign Gold Level Sponsor, aTyr Pharma, Inc., to share more about their passion for raisingLearn More

FSR Team Member Runs in Boston Marathon for Rare Disease Awareness

April 26, 2023

Rebecca Epstein, Senior Research Manager for Foundation for Sarcoidosis Research, participated in the 2023 Boston Marathon on April 17, 2023, running with the NationalLearn More

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