Category: Patient Voices
Living with ILD: A Sarcoidosis Patient Perspective
My journey with Interstitial Lung Disease (ILD) started about 15 years ago, although I did not know it at the time, nor did the physicians who were then treating me. At an annual physical, at the age of 46, I mentioned that my knees were a bit sore after physical...
Introducing the FSR Patient Speakers’ Bureau
We are thrilled to announce the formation of our new FSR Patient Speakers’ Bureau! This bureau consists of 14 experienced and trained sarcoidosis patient advocates who will share their personal stories to advocate for FSR and raise awareness for...
FSR’s Women of Color Committee
Foundation for Sarcoidosis Research is seeking applicants for our first Women of Color Committee. African Americans in the U.S. have been the group most affected by sarcoidosis with an estimated lifetime risk as high as 2% among the population. Additionally, African...
Save the Date for our Virtual Patient Education Summit – June 12-13th!
Click here to register now! Join us for this year’s Virtual Patient Education Summit, June 12-13, 2021! Our summits in September and November of 2020 were incredibly successful. This year we will be offering a unique two-day experience on a fun, interactive...
Why Sarcoidosis Awareness Month Matters
As the nation’s leading nonprofit organization dedicated to sarcoidosis, we believe in the power of community and that game-changing results in sarcoidosis research can be made when we work together. Sarcoidosis is a rare disease, all too often misdiagnosed and...
Meet FSR’s Founders the Wilsons!
As part of FSR’s 20th Anniversary, we’re profiling some of the people who make everything we do at FSR possible, including our co-founders, Board of Directors, and staff. First up, meet our co-founders, the Wilsons! Andrea Wilson is a sarcoidosis warrior...
Traveling the World with Sarcoidosis
I had the good fortune this past summer to travel to Norway. Even more special than being in this gorgeous place was how healthy I felt on this trip. I was able to take walks with my husband, Jay, and our 15-year old son, Andrew, and paddle a kayak under the...
Life After Transplant: Two Stories of Cardiac Sarcoidosis
While cardiac sarcoidosis is diagnosed in around 2-5% of sarcoidosis patients in the United States, recent studies are causing some experts to estimate that the number may be as high as 20-30% of sarcoidosis patients in the U.S. Read about two patient’s experiences with cardiac sarc and heart transplants!
