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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

Patient Ambassador Advocates for In-District Lobby Days

September 13, 2017

The June JAMR Memorial Ride was a Success!

September 13, 2017

Every year in June, the friends and family of the late Jerry Mac Grimes (1946-2014) get together for the June JAMR, a motorcycle rideLearn More

Request for Applications: New Grant Period for FSR Clinical Studies Network

September 12, 2017

VIDEO: 9/11 First Responders and Sarcoidosis

September 11, 2017

FSR Signs Support for DIA and ODTC

September 1, 2017

The Foundation for Sarcoidosis Research recently signed two petitions to show our support for important polices that directly impact many sarcoidosis patients. FSR makesLearn More

Strategic Planning Session with Board Members

August 31, 2017

Rare Disease Research Consortium Announces Ambitious Goals

August 16, 2017

FSR is excited to share some breaking news from the world of rare disease research that could have a huge impact on the futureLearn More

6 Tips for Talking About Sarcoidosis With Loved Ones

August 16, 2017

Can Tracking Fitness Help Sarcoidosis Patients?

August 8, 2017

FDA’s Patient Engagement Advisory Council Plans First Public Forum

August 7, 2017
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