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.
Posters and Abstracts
Partner Joint Publications
Toolkits
White Papers
Annual Updates
Press Releases
FSR Blog
Join our Meet the Experts!
If you want to join us at our meet the experts event this May in San Diego be sure to email us your RSVPLearn More
Rare Disease Day Survey Results
February 28th is Rare Disease Day! We partnered with our online Inspire community to conduct a survey to help better understand the quality ofLearn More
Hike for Lung Health
Hike for Lung Health 2013 September 22, 2013 is the 7th annual Hike for Lung Health event sponsored by the Respiratory Health Association. TheLearn More
Patient of the Week- Emily Pomkala
For our final week we honor Emily Pomkala. We could not think of a better person to end our month with because of herLearn More
Patient of the Week- Cristal Davis!
In our third week, we honor Cristal Davis for the work that she does and the bond she has created with sarcoidosis patients. CristalLearn More
Patient of the Week- Andrea Acton!
In our second week of the Patient of the Month we honor Andrea Acton! The work she has done on behalf of sarcodiosis hasLearn More
Patient of the Week!- Lona King
This August we are featuring Patients of the Month! Each Friday, we will be highlighting a new patient. Every patient is different, and FSRLearn More
Abstract Scholarship Awardee- Caroline Broos
FSR is pleased to support the research of Dr. Caroline Broos by awarding her the American Thoracic Society Abstract Scholarship during the ATS ConferenceLearn More
FREE Patient-Doctor Forum May 18
We know you want answers — come meet the experts who have them!! At this Meet the Experts session, you’ll have an opportunity toLearn More
Quick links
Check out these recent updates!