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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2021 Year End FSR Highlights
This year, the Foundation for Sarcoidosis Research (FSR) has made incredible progress towards our mission thanks to your support! There have been significant strides made towards accelerating researchLearn More
#GivingTuesday – November 30, 2021
#GivingTuesday marks the official start to the charitable giving season! On #GivingTuesday we want to you join us in creating a movement to helpLearn More
FSR Awarded $600,000 Chan Zuckerberg Initiative: Rare As One Cycle 2 Grant in Diversity, Diagnosis, and Clinical Trials
We are proud to announce that they have been selected as an awardee for the Chan Zuckerberg Initiative (CZI) Rare As One Cycle 2Learn More
Congratulations to the 2021 FSR Small Research Grant Awardees
FSR is pleased to announce the 2021 Small Research Grant Awardees. As part of our mission, FSR accelerates sarcoidosis research through fellowships, small grants,Learn More
Ignore No More: Foundation for Sarcoidosis Research Launches African American Women & Sarcoidosis Campaign
The Foundation for Sarcoidosis Research (FSR) is excited to announce the official launch of the first of its kind African American Women & SarcoidosisLearn More
How to have a good doctor’s visit
How to have an effective office visit with your provider: Getting the most of your office visits can be tricky, especially if you’reLearn More
Mary’s Anniversary
Mary McGowan’s Reflections on her First Year Anniversary as FSR’s CEO Over the last year, I learned how resilient the FSR community is,Learn More
WHO Air Quality Guidelines Update: Health experts urge nations to implement ambitious air pollution reduction policies
Health experts urge nations to implement ambitious air pollution reduction policies Health experts and patient representative groups have issued a joint statement urging nations toLearn More
aTyr Pharma Announces Positive Data from Phase 1b/2a Pulmonary Sarcoidosis Clinical Trial
On September 13, 2021, aTyr Pharma announced positive results from their Phase1b/2a clinical trial for ATYR1923 in pulmonary sarcoidosis. FSR is proud to haveLearn More
Living with ILD: A Sarcoidosis Patient Perspective
My journey with Interstitial Lung Disease (ILD) started about 15 years ago, although I did not know it at the time, nor did theLearn More
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