About US

Despite the best efforts of researchers for more than a hundred years, sarcoidosis remains a disease that is difficult to diagnose with limited treatment options and no known cause. There is also no known cure, but FSR has been working hard since its founding to find one.

Our Mission

The Foundation for Sarcoidosis Research is the nation's leading nonprofit organization dedicated to finding a cure for this disease and to improving care for sarcoidosis patients. Since its establishment in 2000, FSR has fostered over $4 million in sarcoidosis-specific research efforts and has worked diligently to provide resources to thousands.

Learn more via our website.

 

 

About the FSR Patient Registry

The FSR Patient Registry was developed to try to bring more information directly from patients to sarcoidosis research. Until the Registry was launched in 2015, there had never been a large collection of patient information for study. A lack of data has led doctors to struggle to understand the disease and develop new research ideas and treatment options and led to huge false beliefs about sarcoidosis. To date, many people still believe that sarcoidosis goes away and it is not serious, that the disease cannot cause pain or fatigue, and that the complaints of patients are exaggerated or unfounded. We believe that patients and their concerns should be at the center of research, and that the awareness level of doctors and researchers will change once they have a better idea of how sarcoidosis affects the lives of patients. That’s where our registry comes in.

The Patient Registry allows you to help change false beliefs by sharing your sarcoidosis story. To be a part of the registry, you simply create a profile and complete surveys that help paint a picture about this disease and the people it affects. Your answers will help researchers better understand the needs of patients, treatment needs, and the burden of this disease. In short, it is one of the most powerful ways in which you can speed up research from the comfort of home.

Over 3,100 patients have already joined and their participation helped two new research papers to be written. In addition to research papers, FSR shares anonymous data with our research partners to ensure they have information directly from patients which help them push research forward with you in mind.

Make your voice heard. Join today.

 

What happens once I join?

When you join the FSR Patient Registry, you become part of a community created to inform, support, and speed up sarcoidosis research. However, our promise to you is that you own your health information. Participation is entirely voluntary and you can ask to have your information removed at any time. We will never share your contact information or identifying information with anyone, unless you tell us to reveal it. We also promise to honor your preferences about the type of information we send to you.

When you agree to receive updates from FSR through the Registry, we will contact you up to four times per year regarding new findings from the Registry and/or asking you to revisit your profile. Revisits may allow you the chance to update any information that has changed and/or respond to new questions. While not required, revisits can help researchers identify trends and eventually allow doctors to make predictions about how this disease progresses in different people.

Another option you will have when you join is to allow FSR to contact you regarding research opportunities. Researchers often approach FSR for help letting patients know about studies and in which they can choose to participate if they qualify. By telling patients about studies, FSR ensures that studies make it to completion, leading to new discoveries and treatment options for sarcoidosis. Researchers are never able to contact you directly. If you agree to be contacted about research opportunities, an FSR staff member will send you information by email and tell you how you can get involved if you are interested.

Learn more about your participation.

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