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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.

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FSR Blog

WHO Air Quality Guidelines Update: Health experts urge nations to implement ambitious air pollution reduction policies

September 24, 2021

Health experts urge nations to implement ambitious air pollution reduction policies Health experts and patient representative groups have issued a joint statement urging nations toLearn More

aTyr Pharma Announces Positive Data from Phase 1b/2a Pulmonary Sarcoidosis Clinical Trial

September 24, 2021

On September 13, 2021, aTyr Pharma announced positive results from their Phase1b/2a clinical trial for ATYR1923 in pulmonary sarcoidosis. FSR is proud to haveLearn More

Living with ILD: A Sarcoidosis Patient Perspective

September 15, 2021

My journey with Interstitial Lung Disease (ILD) started about 15 years ago, although I did not know it at the time, nor did theLearn More

Update on Coronavirus, COVID-19

August 30, 2021

COVID-19 Vaccine Boosters for Immunocompromised Patients

August 23, 2021

Sarcoidosis does not automatically indicate an immunocompromised diagnosis. FSR cannot determine or provide recommendations for your individual immunocompromised status. Please consult your physician forLearn More

Introducing the FSR Patient Speakers’ Bureau

July 19, 2021

We are thrilled to announce the formation of our new FSR Patient Speakers’ Bureau!   This bureau consists of 14 experienced and trained sarcoidosisLearn More

FSR-MNK Sarcoidosis Research Fellow Awarded for 2021-2023

June 4, 2021

The Foundation for Sarcoidosis Research (FSR) is pleased to announce the Foundation for Sarcoidosis Research Fellowship Grant for 2021-2023 is being awarded to Dr.Learn More

FSR Welcomes Three New Members to its Board of Directors

May 25, 2021

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

FSR’s Women of Color Committee

May 20, 2021

Foundation for Sarcoidosis Research is seeking applicants for our first Women of Color Committee. African Americans in the U.S. have been the group mostLearn More

COVID-19 Vaccine and Sarcoidosis: a survey of vaccination rate, tolerance and barriers

May 5, 2021

Authors: Arindam Singha, MD1; Tricha Shivas, MBe2 ; Elliot D. Crouser, MD1   Since it was declared a global pandemic in March of 2020,Learn More

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