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
FSR Executive Director Presenting at SCOPE
Tuesday, on February 13 in Orlando, Florida, FSR’s Executive Director Ginger Spitzer will be presenting again at the Summit for Clinical Ops Executives (SCOPE)Learn More
Faces of Sarcoidosis Billboard in Times Square!
This year, as part of our #SarcoidStories campaign during Sarcoidosis Awareness Month, FSR will have a billboard in Times Square. The billboard in the heartLearn More
Nicotine Treatment for Pulmonary Sarcoidosis: A Clinical Trial Pilot Study
Disclaimer: This approach to treatment is still under active investigation to confirm it is safe for patients and effective when used in conjunction with otherLearn More
Take Care of Yourself in 2018: Join a Support Group!
It’s a new year and if you don’t already, it’s time to start prioritizing your self-care. If you’ve been considering reaching out to otherLearn More
Cardiac Sarcoidosis FAQs
Cardiac sarcoidosis is a topic that is growing in popularity both in research and among patients. New research is being published every week onLearn More
PRESS RELEASE: OPIOID EPIDEMIC Impacts Patients suffering from Orphan Disease of Sarcoidosis
CHICAGO, IL, December 19, 2017. Effective and appropriate management of chronic pain is a nation-wide priority, especially given the current US opioid crisis. TheLearn More
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