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FSR Updates

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

Act Now to Protect Drug Development

January 24, 2022

Act Now to Protect Drug Development.   As part of the budgeting process, Congress is discussing cutting back the Orphan Drug Tax Credit forLearn More

It’s All About the Journey

January 20, 2022

I have sarcoidosis and am a Patient Advocate.     In the Fall of 2020, I was diagnosed with neurosarcoidosis. The biggest question I struggled withLearn More

FSR Update 2022: Omicron, Vaccines, and Boosters

January 7, 2022

What to know about Omicron, the vaccines, the boosters, and staying safe    The Omicron variant of the COVID-19 virus is now the dominant variant inLearn More

2021 Year End FSR Highlights

December 28, 2021

This year, the Foundation for Sarcoidosis Research (FSR) has made incredible progress towards our mission thanks to your support!    There have been significant strides made towards accelerating researchLearn More

#GivingTuesday – November 30, 2021

November 29, 2021

#GivingTuesday marks the official start to the charitable giving season! On #GivingTuesday we want to you join us in creating a movement to helpLearn More

FSR Awarded $600,000 Chan Zuckerberg Initiative: Rare As One Cycle 2 Grant in Diversity, Diagnosis, and Clinical Trials

November 3, 2021

We are proud to announce that they have been selected as an awardee for the Chan Zuckerberg Initiative (CZI) Rare As One Cycle 2Learn More

Congratulations to the 2021 FSR Small Research Grant Awardees

October 21, 2021

FSR is pleased to announce the 2021 Small Research Grant Awardees. As part of our mission, FSR accelerates sarcoidosis research through fellowships, small grants,Learn More

Ignore No More: Foundation for Sarcoidosis Research Launches African American Women & Sarcoidosis Campaign

October 12, 2021

The Foundation for Sarcoidosis Research (FSR) is excited to announce the official launch of the first of its kind African American Women & SarcoidosisLearn More

How to have a good doctor’s visit

October 12, 2021

How to have an effective office visit with your provider:   Getting the most of your office visits can be tricky, especially if you’reLearn More

Mary’s Anniversary

October 1, 2021

Mary McGowan’s Reflections on her First Year Anniversary as FSR’s CEO   Over the last year, I learned how resilient the FSR community is,Learn More

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