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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

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Annual Updates

Press Releases

FSR Blog

FSR and Walgreens Unite in Alabama to Boost Sarcoidosis Awareness and Spring Vaccine Education

April 17, 2024

Beginning April 15th, Walgreens, a pharmacy and retail leader who plays a critical role in the U.S. healthcare system by providing a wide rangeLearn More

FSR Launches Say Sarcoidosis Campaign for April’s Awareness Month

April 2, 2024

The Foundation for Sarcoidosis Research (FSR), the leading international organization dedicated to finding a cure for sarcoidosis and improving care for patients, is proudLearn More

26 Patient Volunteer Leaders Attend the Foundation for Sarcoidosis Research Global Sarcoidosis Clinic Alliance Volunteer Patient Leadership Advanced Training Conference held at Cleveland Clinic

March 27, 2024

26 Patient Volunteer Leaders representing 16 states and 17 hospitals joined the Foundation for Sarcoidosis Research (FSR) at the inaugural FSR Global Sarcoidosis ClinicLearn More

FSR to Host 30 Volunteer Patient Leaders at Unique In-Person Training at Cleveland Clinic

March 5, 2024

The Foundation for Sarcoidosis Research (FSR) is honored to host its inaugural in-person training of FSR-GSCA Volunteer Patient Leaders from around the United StatesLearn More

6 Things You Should Know About Clinical Trials

February 28, 2024

Are you thinking about participating in a clinical trial? Here are 6 things you should know! Clinical trials can be an intimidating and unexploredLearn More

Tricha Shivas Promoted to Chief of Staff and Strategy at Foundation for Sarcoidosis Research

February 19, 2024

The Foundation for Sarcoidosis Research (FSR) proudly announces the promotion of Tricha Shivas to Chief of Staff and Strategy. Ms. Shivas, who joined FSRLearn More

Advocating for Improved Access to Oxygen

February 13, 2024

The Foundation for Sarcoidosis Research is part of a 27-member coalition dedicated to improving access to supplemental oxygen for all in need. Chasta Posey,Learn More

FSR Awards $100,000 in Support of Cardiac Sarcoidosis

December 19, 2023

The Foundation for Sarcoidosis Research (FSR) announces $100,000 in funding for support of research aimed at improving diagnosis, management, and treatment of cardiac sarcoidosis. Learn More

FSR Announces 3 New Members to the 40 Member FSR Global Sarcoidosis Clinic Alliance through its FSR-GSCA Capacity Building Grants

November 2, 2023

Foundation for Sarcoidosis Research (FSR) announces three clinics that have been selected as members of FSR Global Sarcoidosis Clinic Alliance (FSR-GSCA) – a groundbreaking initiativeLearn More

The importance of finding your sarcoidosis community

October 19, 2023

Why is finding your community important? After a diagnosis that changes your life, you need people who understand the journey you are about toLearn More

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