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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FSR Blog
Honoring a Mother’s Legacy: Molly Flick’s Fight Against Sarcoidosis
For Molly Flick, the loss of her mother, Dawn Heilman, was more than just the passing of a loved one—it was a call toLearn More
When exposed to wildfires and during the clean up take the following precautions to protect your health
When exposed to wildfires and during the clean up, consider the following precautions to protect your health. Stay Indoors: When possible, minimize exposure toLearn More
Celebrating FSR’s 25 Years of Innovation, Empowerment, and Progress: Shaping the Future Together!
This year marks a significant milestone for the Foundation for Sarcoidosis Research (FSR) as we celebrate our 25th anniversary! Since our incorporation on FebruaryLearn More
FSR Awards $300k in Grant Funding to Improve Diagnosis and Treatment of Sarcoidosis
The Foundation for Sarcoidosis Research (FSR) has awarded three pilot grants in the amount of $100,000 each, to Dr. Satish Sati from the UniversityLearn More
FSR Warns of Increased Risk of Sarcoidosis from Fire and Smoke Exposure
Foundation for Sarcoidosis Research Warns of Increased Risk of Sarcoidosis from Fire and Smoke Exposure Urging Immediate Action to Prevent Future Health Consequences 9/11Learn More
Important Clinical Trial Results Announcement for Sarcoidosis Patients
We understand that living with sarcoidosis can be challenging, and many of you are constantly seeking new treatment options. We want to share anLearn More
FSR Doubles Investment in Cardiac Sarcoidosis Research with $200,000 in Grants to Advance Diagnostic and Treatment Breakthroughs
The Foundation for Sarcoidosis Research (FSR) is proud to announce the recipients of the 2024 FSR Cardiac Sarcoidosis Grant, providing $200,000 in funding toLearn More
FSR receives confirmation from the Department of Labor ensuring patient access to FMLA for participation in clinical trials
In August of 2023, the Foundation for Sarcoidosis Research (FSR) submitted a Request for Opinion Letter on Clinical Trials and the Family and MedicalLearn More
Nearly 350 Patients Participate in the Foundation for Sarcoidosis Research Externally Led Patient-Focused Drug Development Meeting with the FDA
On October 28, 2024, the Foundation for Sarcoidosis Research (FSR) hosted a groundbreaking Externally Led Patient-Focused Drug Development (EL-PFDD) meeting on sarcoidosis with theLearn More
12 Years of Sarcoidosis Advocacy
“I was diagnosed with Cutaneous Sarcoidosis in July of 2011. When I was diagnosed, I was alone and didn’t know what this disease wasLearn More
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