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
FSR Inaugural Sarcoidosis Crystal Awards Gala to Honor Exceptional Individuals in the World of Sarcoidosis
The Foundation for Sarcoidosis Research (FSR), the leading international nonprofit organization dedicated to finding a cure and improving care for sarcoidosis patients, announces FSR’s InauguralLearn More
Patient Perspective: Oxy, Fentanyl, and the Opioid Crisis
– Rebecca Stanfel FSR Speakers Bureau member and Patient Advocate, Rebecca Stanfel, shares her experience with pain medications as part of her sarcoidosisLearn More
The Dripping Faucet of Sarcoidosis
I had a dripping faucet in my home that was repaired recently. This annoyance somehow made me think about sarcoidosis and how itLearn More
Take Our Quiz to Find Out Your Volunteer Style
What’s your volunteer style? Do you want to make a difference in sarcoidosis but not sure exactly what role would suit you best? TakeLearn More
Clinical Trial Enrolling Now for New Possible Steroid-Reducing Therapy
aTyr Pharma, Inc. is partnering with the Foundation for Sarcoidosis Research (FSR) to recruit for a global pivotal Phase 3 study, EFZO-FIT™, of aTyr’sLearn More
I Am One: Using My Voice to Bring Awareness to Sarcoidosis
Darlene Anita Scott is a writer and visual artist living with sarcoidosis. She applied to become an FSR Global Sarcoidosis Clinic Alliance (GSCA) CommunityLearn More
The Foundation for Sarcoidosis Research (FSR) awards $50,000 in support of cardiac sarcoidosis
The Foundation for Sarcoidosis Research (FSR) is pleased to award Dr. Nabeel Hamzeh, Professor of Internal Medicine – Pulmonary, Critical Care and Occupational Medicine at The UniversityLearn More
Blog: Addressing Healthcare Issues that Disproportionately Affect Black Americans
FSR Patient Advisory Committee and ACTe Now Committee Member, Calvin Harris, shares the importance of increasing awareness and representation of Black patients inLearn More
The Importance of the FSR Patient Registry
If you have sarcoidosis, you MUST join the Foundation for Sarcoidosis Research (FSR) Patient Registry. With less than 200,000 of us diagnosed each year,Learn More
Transitioning to Medicare from Employer Paid Insurance – While on Infliximab
Most of us in our 60’s start looking forward to the day when we are no longer dependent on employer paid health insurance orLearn More
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