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
FSR Staff Presents at International Sarcoidosis Conference
Three FSR team members presented at the World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG) Annual Meeting in Crete, Greece this month. TheLearn More
Educating the Public with RareInsights
Our partners at NORD recently launched a new initiative called RareInsights: RareInsights™ is a NORD® initiative to help expand public knowledge of rare diseases and translate that knowledge intoLearn More
Tips for Good Self-Care!
May is Mental Health Awareness Month! Many patients battling sarcoidosis and other chronic illnesses know the stress that comes not only from the diseaseLearn More
Skin Sarcoidosis FAQs
Dermatologist and sarcoidosis specialist Misha Rosenbach, MD from University of Pennsylvania kindly offered to answer the dermatological questions from our conference’s Q&A session viaLearn More
Quick links
Check out these recent updates!