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
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FSR Blog
A Year in Review: FSR’s Research Initiatives
This year, FSR made some huge progress on our research agenda. This coming year promises to build on that progress, with new developments onLearn More
Your Holiday Shopping Could Help FSR!
It’s that time of year again- no matter what holidays you celebrate, it’s the season for giving and everyone’s stocking up on gifts forLearn More
Our Online Support Group Hit 40,000 Members!
Our online support community has continued to grow over the past few years, reaching 40,000 online members this month! The Stop Sarcoidosis support communityLearn More
Tips on Your Year-End Charitable Gift
Now that it’s December, it’s high time to think about your year-end charitable gifts—and to make sure that you time them to your bestLearn More
Phase 1 Trial for New ILD Therapy Begins
The following is an excerpt from a press release by aTyr Pharma, Inc detailing their new study focusing on a potential therapy for treatingLearn More
FSR Represented at ATS Public Advisory Roundtable
FSR Executive Director Ginger Spitzer attended the 2017 ATS Public Advisory Roundtable Planning Meeting on Nov 17-18 in Miami. Our membership in PAR allowsLearn More
Join Us in Jacksonville!
FSR will be hosting our seventh and final sarcoidosis patient education conference of the year in Jacksonville, Florida! Sarcoidosis Patient Education Conference November 11,Learn More
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