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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

FSR receives confirmation from the Department of Labor ensuring patient access to FMLA for participation in clinical trials

November 18, 2024

In August of 2023, the Foundation for Sarcoidosis Research (FSR) submitted a Request for Opinion Letter on Clinical Trials and the Family and MedicalLearn More

Nearly 350 Patients Participate in the Foundation for Sarcoidosis Research Externally Led Patient-Focused Drug Development Meeting with the FDA

October 31, 2024

On October 28, 2024, the Foundation for Sarcoidosis Research (FSR) hosted a groundbreaking Externally Led Patient-Focused Drug Development (EL-PFDD) meeting on sarcoidosis with theLearn More

12 Years of Sarcoidosis Advocacy

October 25, 2024

“I was diagnosed with Cutaneous Sarcoidosis in July of 2011. When I was diagnosed, I was alone and didn’t know what this disease wasLearn More

Sarcoidosis…and the Sound of Silence

September 17, 2024

  These last few weeks have been very rough on me. I feel as if I have been going through both a spiritual andLearn More

FSR Expands Scientific Advisory Board with 14 New Experts

August 28, 2024

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

Foundation for Sarcoidosis Research Awards $300,000 to Support Early-Career Investigators Through the Sarcoidosis Research Fellowship Grant

July 24, 2024

The Foundation for Sarcoidosis Research (FSR) is pleased to announce that Dr. Greer Waldrop, University of California, San Francisco, and Dr. Miles Hagner, UniversityLearn More

I Had a Heart Transplant Due to My Cardiac Sarcoidosis

July 23, 2024

Before my heart disease journey began in Spring 2019, I was a passionate and dedicated educator and led a dynamic and fulfilling life. ILearn More

Blog: My Journey with Neurosarcoidosis

July 9, 2024

My journey with neurosarcoidosis began on May 5, 2013, when I woke up in the morning with the worst headache of my life, lightLearn More

Sarcoidosis Test Aims to Speed, Simplify Diagnostic Process

June 19, 2024

Sarcoidosis is difficult to diagnose for a variety of reasons, Mary McGowan, CEO of the Foundation for Sarcoidosis Research, told Diagnostics World. For one,Learn More

FSR Launches the Coalition for Clinical Trial Equity to Address Barriers Faced by Black Patients

May 20, 2024

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

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