Darlene Anita Scott is a writer and visual artist living with sarcoidosis. She applied to become an FSR Global Sarcoidosis Clinic Alliance (GSCA) Community Outreach Leader and is dedicated to sharing her sarcoidosis story with the public to raise awareness and help...
“My hope is that this campaign will greatly increase awareness of sarcoidosis and encourage Black patients to participate in clinical trials. That will ultimately improve our lives and benefit everyone in the sarcoidosis community.” Calvin Harris FSR Patient...
If you have sarcoidosis, you MUST join the Foundation for Sarcoidosis Research (FSR) Patient Registry. With less than 200,000 of us diagnosed each year, we are the sources of data needed to advance sarcoidosis research. FSR created the Patient Registry to share...
Most of us in our 60’s start looking forward to the day when we are no longer dependent on employer paid health insurance or the marketplace and can go on Medicare. We envision a much simpler process and perhaps, naively, that the focus will be on getting our...
“When I was diagnosed in 2014, sarcoidosis was a big word with a lot of scary outcomes (which sometimes still applies, of course). But FSR helped turned my fears into positive actions.”Calvin FSR Patient Advisory Committee and ACTe Now Committee Member, Calvin...
Over the past two years, this Global Pandemic has been changing the way we all exist and go about living our ‘normal’ daily lives – if there is such a thing anymore. Some of these adjustments may be temporary, while some may end up being the way we ‘do business’...
In February 2022, FSR hosted Ignore No More: African American Women & Sarcoidosis Webinar, a virtual engaging discussion on sarcoidosis, how it impacts African American women, and what can be done to improve outcomes. Mary Oldham was one of the attending...
You may have a lot of questions about sarcoidosis, especially if you are newly diagnosed. And other times, you may not know what to ask your sarcoidosis specialist, especially in the moment. We recommend jotting down a few notes ahead of time to bring with you...
In September 2021, an article entitled “Challenges of Sarcoidosis and Its Management” (Drent et al., 2021) was published in the prestigious New England Journal of Medicine. This article, written by two active members on FSR’s Scientific Advisory Board, Marjolein...
FSR Sarcoidosis Support Group In response to feedback received in 2021 and a growing need to support patients where they are, FSR has launched an online peer-led support group for people living with sarcoidosis. While 2022 will bring additional, more localized support...
