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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

Introducing 2020 Patient Education Summits!

October 11, 2019

Shopping online? Use AmazonSmile to support FSR!

October 10, 2019

Why Am I Not Eligible? Understanding Exclusion Criteria for Clinical Trials

October 10, 2019

Clinical trials can be an exciting opportunity for patients to try a new drug or treatment and see if it helps their sarcoidosis symptoms. These trials are important because they advance sarcoidosis research and bring us closer to finding better treatment and a cure.

The seasons are changing, and so are things at FSR!

October 9, 2019

Fall is officially here, and with the change in seasons comes some exciting new changes at FSR as well! FSR is thrilled to welcomeLearn More

Support FSR through the CFC!

October 5, 2019

FSR is a part of the world’s biggest workplace charity campaign, the Combined Federal Campaign (CFC). The CFC enables government workers to support FSR through payroll deductions.

Join us in San Diego for our 2020 Sarcoidosis Awareness 5K!

October 1, 2019

Increase Your Impact with Corporate Matching!

September 26, 2019

Buyer Beware: “Miracle Cures” for Sarcoidosis

September 24, 2019

Why Sarcoidosis Trials are Important

September 23, 2019

Prednisone and Weight Loss

September 17, 2019

Dealing with weight gain cause by prednisone is hard, here are some diet and exercise tip help combat this side-effect.

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