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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

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Annual Updates

Press Releases

FSR Blog

Understanding Cardiac Sarcoidosis

October 5, 2018

Cardiac sarcoidosis is diagnosed in 2-5% of patients with systemic sarcoidosis. However, some reports are showing that the incidence of cardiac sarcoidosis in the US may be as high as 20-30% in sarcoidosis patients.
For the patients who go undiagnosed, the repercussions can sometimes be fatal. Wendy Ullmer, a 36-year-old from Wisconsin was unfortunately one of those cases, leaving her husband and their four young boys devastated by her loss. Read her story and learn the signs and symptoms that indicate you should talk to you doctor about screening for cardiac involvement.

What is an FSR Patient Ambassador?

October 2, 2018

All of our patients ambassadors have a different experience and a different reason for becoming an ambassador. Find out in their own words what our patients ambassadors do and why they became involved with this program.

Team KISS is Going to New Orleans!

September 18, 2018

We have big news! FSR’s sixth annual Team KISS 5K Run/Walk will take place in New Orleans, Louisiana!

Ask The Ambassadors: Developing a Healthy Lifestyle

September 13, 2018

We reached out to our patient ambassadors and asked for their advice on developing a healthy lifestyle while dealing with sarcoidosis.

Swimming for Sarcoidosis Awareness

August 29, 2018

Want to Make an Impact This Summer? Join Team KISS!

August 22, 2018

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

August 22, 2018

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

August 15, 2018

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?

August 8, 2018

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

3 Tips for Coping When You’re Chronically Ill

July 23, 2018
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