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
Healthcare Innovation Under the New Administration
With the upcoming inauguration of the 45th President of the United States, the country is preparing for big changes, especially when it comes to healthcare. The potential repeal of the Affordable Care Act threatens some provisions for chronic and rare disease patients. For example, the ACA prohibited insurance companies from setting lifetime caps on medical expenses …
Growing the Movement: Team Aussie
Steve McLeod, a sarc warrior, leader of Team Aussie, and supporter of FSR, was recently featured in the Courier Mail, a daily newspaper inLearn More
VIDEO: Mindfulness Webinar
Dr. Lesley Ann Saketkoo, MD, MPH, Associate Professor of Medicine at Tulane University and a strong believer in the power of mindfulness in overcomingLearn More
FSR Well-Represented at SCOPE 2017
FSR’s Ginger Spitzer will be presenting at the 8th annual Summit for Clinical Ops Executives, or SCOPE in Miami, FL later this month. SCOPELearn More
Baltimore Clinical Trial for Neurosarcoidosis Patients
For all neurosarcoidosis patients, a clinical trial in the Baltimore area entitled, “Clinical Biomarkers of Disease Activity and Treatment Response in Patients with CNSLearn More
21st Century Cures Passed…What Comes Next?
The final version of the 21st Century Cures Act was signed into law by Obama on Dec. 13, 2016. The bill has 17 titles with roughly 300 subsections, addressing a wide variety of current needs in health and medicine. The campaign #CuresNow helped build the momentum that got the bill passed, but how soon can patients really expect results- especially when there are almost 6,500 rare diseases with no known cure?
Patient Data: Unlocking the Future of Research
FSR’s Executive Director Ginger Spitzer recently attended the 2nd Annual CBI Patient Registry Summit in Philadelphia. The conference focused on the latest news aboutLearn More
Board of Directors Welcomes Jim Davis
We are excited to welcome Jim Davis to the FSR Board of Directors. Jim is the Executive Vice President of Advera Health Analytics, Inc. HeLearn More
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