Sarcoidosis: Seek answers. Inspire results.
The Foundation for Sarcoidosis Research and the CHEST Foundation of the American College of Chest Physicians have teamed up to launch Sarcoidosis: Seek Answers. Inspire Results. – an awareness campaign that encourages people living with sarcoidosis to take a proactive role in their treatment plan.
Sarcoidosis is an inflammatory disease that can affect almost any organ in the body. It occurs when a person’s immune system overreacts resulting in the formation of granulomas, microscopic clumps of inflammatory cells. When too many of these clumps form in an organ they can interfere with how that organ functions. It is estimated to affect 200,000 Americans. While most commonly diagnosed in African American women ages 20-40, it has been characterized in all demographics regardless of age, gender, or race. The cause of sarcoidosis is currently unknown.
Disease presentation and severity varies widely. While approximately two thirds of patients experience resolution of their disease without specific therapy, other patients experience a wide range of debilitating symptoms which can lead to death. Due to the diverse presentation, classification as a rare disease, lack of knowledge among some physicians, and diagnosis through exclusions, the average time to diagnosis is 7 years. Patients often report difficulty in finding a knowledgeable physician and emotional support resources. As a result, many patients are left under treated.
Volunteers, researchers, caregivers, and medical professionals are working to improve the quality of life and prognosis of persons living with sarcoidosis and their families, but more awareness among physicians and the public is desperately needed.
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 patients.
Since its establishment in 2000, FSR has fostered more than $4 million in sarcoidosis-specific research and has worked diligently to provide resources to thousands. We believe that informed, engaged patients are critical to breakthroughs in disease research and improved outcomes for all individuals who suffer from sarcoidosis.
We offer several specialized resources for sarcoidosis patients so become more informed about sarcoidosis and help us to accelerate research to improve outcomes for all patients:
Recognizing Sarcoidosis: Get the Facts
- Learn more about sarcoidosis and how you can raise awareness with our Awareness Toolkit for Patients
- Share our Awareness Toolkit for Physicians with your doctors
- Download awareness tools for social media, including profile pictures, cover images, fact cards, and more
- Join the FSR Patient Registry – improve awareness among doctors and researchers by sharing your experience with sarcoidosis through a 30 minute survey. Your answers to will improve our understanding of sarcoidosis, help researchers design new and improved clinical studies, and help to unlock a cure!
- Learn about your treatment options with this printable, web-based tool or mobile app, developed by leading world experts in sarcoidosis.
- Find a physician who is familiar with sarcoidosis and your treatment options.
- Join our online support community to connect with over 30,000 sarcoidosis patients worldwide or search for a local support group.
- Join us at upcoming events to raise awareness or improve your understanding for sarcoidosis.
Help us spread the word!
Use the share buttons below to raise awareness for sarcoidosis sufferers everywhere. Share your experience with sarcoidosis using #sarcoidstories.