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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Our Commitment to Our Community
FSR has spent 20 years serving sarcoidosis patients and their families, as well as the healthcare providers and researchers who dedicate their careers toLearn More
2020 Education Summits Transition to Virtual Format
FSR has made the decision to transition our in-person Patient Education Summits to be Virtual Summits. This decision was made due to the ongoingLearn More
Meet FSR’s Founders the Wilsons!
As part of FSR’s 20th Anniversary, we’re profiling some of the people who make everything we do at FSR possible, including our co-founders, BoardLearn More
FSR Seeks Organization’s First Ever Chief Executive Officer
FSR is now looking to hire the first Chief Executive Officer (CEO) to advance the mission to fund sarcoidosis research and improve the livesLearn More
SAVE THE DATE: #GivingTuesdayNow on May 5th, 2020
The global coronavirus pandemic has affected nearly everyone around the world – including our family here at the Foundation for Sarcoidosis Research. Our missionLearn More
Memorial Monday: A Day to Honor Those Gone Too Soon
On Monday, April 27,2020, the sarcoidosis community will be honoring the lives of the sarcoidosis warriors that were lost too soon. Memorial Monday isLearn More
NORD offers financial assistance to rare community for COVID-19
FSR is a proud member of NORD, the National Organization for Rare Disorders. On April 15th, NORD announced the creation of a program toLearn More
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