Patient Resources

Patient Resources

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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.a 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 undertreated. Learn more.

April Awareness Month Events

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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 $3 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:

Patient Toolkit:
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Physician Toolkit:Physicians Toolkit Cover

Raise awareness on social media:

Facebook Profile Pictures:
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Twitter Profile Pictures:
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LinkedIn Profile Pictures:
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Facebook Cover Photos:
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Twitter Cover Photos:
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LinkedIn Cover Photos:
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Fact Cards for Facebook & Twitter:
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Fact Cards for LinkedIn:
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Quote Card for Facebook & Twitter:
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Fact Card for LinkedIn:
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  1. Patient Registry – As a person living with sarcoidosis, or connected to a loved one with sarcoidosis, you know better than anyone that more research is urgently needed to improve treatment options and find a cure. By registering in this HIPPA-complaint, online patient registry, you provide the information needed by scientists to better understand sarcoidosis, treatment options, diagnostic capabilities, and more. Data is coded, unidentifiable, and secure. Learn more and register today.
  2. Treatment Protocol – Learn about your treatment options with this printable, web-based tool or mobile app, developed by leading world experts in sarcoidosis.
  3. Physicians DirectoryFind a physician who is familiar with sarcoidosis and your treatment options.
  4. Support Groups – Join our online support community to connect with over 25,000 sarcoidosis patients worldwide or search for a local support group.
  5. Patient Conferences and Events – See calendar above for events taking place throughout the month of April. The Foundation for Sarcoidosis Research hosts six patient conferences annually, as well as webinars and signature events such as the K.I.S.S. (Kick In to Stop Sarcoidosis) 5K Walk/Run. Learn more and register today!

Watch and share these videos:



Help us spread the word!

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Foundation for Sarcoidosis Research
www.stopsarcoidosis.org
 

CHEST Foundation
www.chestnet.org/sarcoid

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Patient education resources supported in part by grants from Mallinckrodt Pharmaceuticals and Pfizer, Inc.

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