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
A Sarc Warrior’s Perspective on Pulmonary Rehabilitation
Many sarcoidosis patients struggle with lung function which can make exercise seem impossible. Programs like Pulmonary Rehabilitation help patients with lung diseases improve lung function, reduce symptoms, and improve quality of life.
Interview to Understand Experience Living with Sarcoidosis
A doctoral student at Northcentral University is doing a research study about the experience of living with sarcoidosis. Participants must: Be age 21 yearsLearn More
Application Cycle for 2019-20 Patient Ambassador Program Term Now Open!
We are thrilled to announce that applications are now being accepted for the 2019-2020 term of the FSR Patient Ambassador Program.
Clinical Studies Network (2019 Update)
In 2019 the Clinical Studies Network (CSN) will conduct a study focused on cardiac sarcoidosis at all 12 of our sites.
Life as a Sarc Warrior: Dealing with Financial Concerns
Life with sarcoidosis can be hard. This is why we reached out to you, our patients, to better understand the financial hardships that come with sarcoidosis.
FSR Attends Hill Day
On Oct. 2nd and 3rd FSR’s Executive Director, Ginger Spitzer, was able to travel with PAR to Washington D.C for ATS Hill Day.
50 States, 5,000 Miles, $50,000: Cycling Against Sarcoidosis
The husband of a sarc warrior is planning an ambitious fundraiser, cycling 5,000 miles to raise $50,000 for sarcoidosis research.
Life as a Sarc Warrior: Advice on Friends and Family
Life with sarcoidosis can be hard and no one knows that better than our patients. This is why we reached out to you, our patients, for advice.
Ask The Ambassadors: How to Navigate Medical Expenses
We reached out to our patient ambassadors and asked for their advice on navigating the medical expenses that come with sarcoidosis.
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