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I was diagnosed with Pulmonary Sarcoidosis in 1997 and since that time Sarcoidosis has affected my lungs, heart, eyes, and nervous system. For the last 25 years I have been in search of a cause and cure for this Rare Autoimmune Inflammatory Disease. I am currently volunteering as an Outreach Leader and Patient Advocate for the Foundation for Sarcoidosis Research for our clinical campaign from October through November and We need you help.
To ensure Black American sarcoidosis patients are at the forefront of this discussion, FSR collaborated with sarcoidosis experts and patients, known as Patient and Clinical Advisory Committees, to create a survey to provide a platform for Black Americans to share their experiences and insights. Black Americans at least 18 years of age and older, who live in the U.S., are encouraged to take the survey at www.stopsarcoidosis.org/ACTNow or link https://rx4good.qualtrics.com/jfe/form/SV_4MYoU9YGjvAbuJg for the survey to help inform recommendations for improving care and increasing representation in clinical trials. The survey is available now through November 30, 2022, and will culminate in a Congressional Briefing in April of 2023, Sarcoidosis Awareness Month.
In some people, the disease may result in the deterioration of the affected organ. When the granulomas or fibrosis seriously affect the function of a vital organ(s)-- such as the lungs, heart, nervous system, liver, or kidneys -- sarcoidosis can be fatal.
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