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
Environmental Triggers: An Odyssey of Exposures
It was 1976 and Theresa Michelle— a newlywed working at the Department of Justice in Washington D.C.—was having trouble holding on to heavy potsLearn More
Hospitals start comparing health outcomes internationally
A new collaboration between six hospitals around the world is allowing doctors to exchange data and compare case outcomes, in order to establish best practices when itLearn More
Environmental Triggers: Growing Up in Rubbertown
FSR recently reached out to members of our online community to ask if they felt that poor air quality, industrial pollution, or any otherLearn More
New Locations in Clinical Trial for PH
As a patient, you are key to advancing research! If you have- or think you might have- pulmonary hypertension along with your sarcoid, you mayLearn More
2017 Patient Conference Suite
FSR is proud to announce that we will host a record seven conferences in 2017! There remain many regions in which it is difficultLearn More
2017 K.I.S.S. 5K in Nashville
FSR is excited to announce that the K.I.S.S. 5K Run/Walk will move to Nashville this year! After hosting the event in Chicago for threeLearn More
Meet Sarcoidosis Experts in L.A.
Presentations included: Sarcoidosis Presentation and Diagnosis Bob Baughman, MD of University of Cincinnati Therapy for the Inflammation: Prednisone to Remicade and Beyond W. Ennis James,Learn More
San Francisco Research Studies Looking for Participants
UCSF Sarcoidosis Studies are Recruiting! San Francisco based studies are looking for people diagnosed with sarcoidosis in or near the bay area to joinLearn More
#CuresNow: Time is Running Out for the 21st Century Cures Act
Time is running out for an important piece of legislation that has recently stalled in the Senate. The 21st Century Cures Act was passedLearn More
Partnership Spotlight: FasterCures
As a foundation, our goals start with ensuring that patients are getting accurate educational information and end with our ultimate mission: stop sarcoidosis. Some ofLearn More
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