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
Learn the Facts About Interstitial Lung Disease on ILD Day, Sept. 13
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
“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
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
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
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
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
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
FSR Launches the Stand Up for Sarc National Campaign for April’s Awareness Month
The Foundation for Sarcoidosis Research (FSR) is proud to launch the Stand Up for Sarc Campaign this April as part of National Sarcoidosis Awareness Month. Sarcoidosis (pronouncedLearn More
(FSR) Trains 60 Patient Volunteer Leaders to Provide Support and Education, and Improve Patient Outcomes for those Impacted by Sarcoidosis
The Foundation for Sarcoidosis Research (FSR), the leading international nonprofit organization dedicated to finding a cure and improving care for sarcoidosis patients, conducted aLearn More
FSR Named an Official Charity Partner of the 2023 TCS New York City Marathon
Foundation for Sarcoidosis Research (FSR) has been named an Official Charity Partner for the 2023 TCS New York City Marathon, which takes place on Sunday,Learn More
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