“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 2024 will bring additional, more localized...
Addressing Barriers to Care to Improve the Lives of Those with Sarcoidosis: Why I Support FSR’s African American Women and Sarcoidosis Campaign I was diagnosed with sarcoidosis over 8 years ago, starting in my lungs & lymph nodes, then shortly after it...
I have sarcoidosis and am a Patient Advocate. In the Fall of 2020, I was diagnosed with neurosarcoidosis. The biggest question I struggled with after my diagnosis was, “What do I do now?”. My life was completely upended. I struggled with new treatments...
How to have an effective office visit with your provider: Getting the most of your office visits can be tricky, especially if you’re not sure what you may need to talk about. But fortunately there are some tried and true ways to have a productive,...
On September 13, 2021, aTyr Pharma announced positive results from their Phase1b/2a clinical trial for ATYR1923 in pulmonary sarcoidosis. FSR is proud to have supported this clinical trial. The trial demonstrated that ATYR1923 was safe and well-tolerated, 33%...
