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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

One-Question Survey: Future Clinical Trial for Pulmonary Sarc

December 2, 2016

Dear Pulmonary Sarcoidosis Patient, FSR is reaching out with our partner Transparency Life Sciences to ask if you would be interested in a futureLearn More

Participate in #GivingTuesday today!

November 29, 2016

What is Giving Tuesday? Giving Tuesday comes on the heels of the infamous Black Friday and other designated shopping days like “Small Business Saturday” and “CyberLearn More

Mindfulness and Chronic Illness

November 27, 2016

Below are excerpts from an article written by Dr. Lesley Saketkoo, MD, MPH called “Mind and Body Strength” Gentle Listening to the Softening Breath.”Learn More

Environmental Triggers: An Odyssey of Exposures

November 2, 2016

It was 1976 and Theresa Michelle— a newlywed working at the Department of Justice in Washington D.C.—was having trouble holding on to heavy potsLearn More

Hospitals start comparing health outcomes internationally

October 20, 2016

A new collaboration between six hospitals around the world is allowing doctors to exchange data and compare case outcomes, in order to establish best practices when itLearn More

Environmental Triggers: Growing Up in Rubbertown

October 18, 2016

FSR recently reached out to members of our online community to ask if they felt that poor air quality, industrial pollution, or any otherLearn More

New Locations in Clinical Trial for PH

October 5, 2016

As a patient, you are key to advancing research! If you have- or think you might have- pulmonary hypertension along with your sarcoid, you mayLearn More

2017 Patient Conference Suite

October 5, 2016

FSR is proud to announce that we will host a record seven conferences in 2017! There remain many regions in which it is difficultLearn More

2017 K.I.S.S. 5K in Nashville

October 5, 2016

FSR is excited to announce that the K.I.S.S. 5K Run/Walk will move to Nashville this year! After hosting the event in Chicago for threeLearn More

Meet Sarcoidosis Experts in L.A.

October 4, 2016

Presentations included: Sarcoidosis Presentation and Diagnosis Bob Baughman, MD of University of Cincinnati  Therapy for the Inflammation: Prednisone to Remicade and Beyond W. Ennis James,Learn More

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