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
Ask The Ambassadors: Developing a Healthy Lifestyle
We reached out to our patient ambassadors and asked for their advice on developing a healthy lifestyle while dealing with sarcoidosis.
Want to Make an Impact This Summer? Join Team KISS!
Summer isn’t over which means now is the perfect time to soak up the extra sunlight and mild weather while you fundraise with Team KISS!
Ask The Ambassadors: Hard Conversations with Friends and Family
We reached out to our patient ambassadors and asked for their advice on having hard conversations with friends and family about sarcoidosis.
Healthy Eating Habits: Heart and Lungs
Developing healthy eating habits while dealing with sarcoidosis can be hard. Here are some diet tips to help keep your heart and lungs healthy.
Will You Help Us Find a Cure for Sarcoidosis?
FSR strives to bring patients the most up-to-date information about sarcoidosis, but we can’t do that without you. Besides being a rare disease, affectingLearn More
FSR Hosts Clinical Studies Network Meeting in Chicago
The members of the FSR Clinical Studies Network met on June 29th in Chicago, Illinois to determine and plan the next CSN Core StudyLearn More
Become a Sarcoidosis Advocate in Your Hometown!
Rare disease patients find out soon after a diagnosis that they’ll have to learn advocate for themselves- in the doctors office, to insurance companies,Learn More
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