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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How Patients Are Transforming Research Funding Decisions
The Foundation for Sarcoidosis Research (FSR) is proud to share our implementation of a Patient Stakeholder Reviewer Panel into our grant review cycles. ThisLearn More
FSR Participates in WASOG 2026
From July 15–17, 2026, Porto, Portugal hosted clinicians, researchers, and patient advocates from around the globe for the 2026 Congress of the World AssociationLearn More
Foundation for Sarcoidosis Research Announces 13 Inaugural Sites for Groundbreaking FSR Clinical Data Registry
The Foundation for Sarcoidosis Research (FSR), the leading international organization dedicated to finding a cure for sarcoidosis and improving care for those affected, todayLearn More
FSR Invests $700,000 Across Four Sarcoidosis Studies
The Foundation for Sarcoidosis Research (FSR) has awarded $700,000 in grant funding to four awardees through its Early Career Fellowship and Established Investigator grantLearn More
FSR Announces New Partnership with Patient Advocate Foundation to Expand Insurance and Disability Support for Sarcoidosis Patients
The Foundation for Sarcoidosis Research (FSR), the leading international organization dedicated to finding a cure for sarcoidosis and improving care for those living withLearn More
Powering Sarcoidosis Advocacy: FSR at ATS 2026
In May 2026, the FSR team came together in Orlando, Florida for the 2026 American Thoracic Society (ATS) International Conference. ATS is a majorLearn More
Living with Sarcoidosis: A Family Story of Strength and Awareness
Sarcoidosis has deeply impacted my family. My late grandmother lived with the disease, and my mother has been courageously managing it for over 30Learn More
FSR, in Partnership with ATS, Welcomes Dr. Matt Craig to Drive Strategic Research Initiatives
Through the long-standing collaboration between Foundation for Sarcoidosis Research (FSR) and the American Thoracic Society (ATS), FSR and ATS are pleased to announce thatLearn More
FSR Research Report: FSR at the American Academy of Dermatology
The American Academy of Dermatology (AAD) 2026 Annual Meeting in Denver in March 2026 was an important moment for the sarcoidosis community, especially forLearn More
Ten Years with Sarcoidosis — Still Riding, Still Breathing
“Ten years ago, I heard a word that would quietly change the course of my life: sarcoidosis. At the time, I had no ideaLearn More
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