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...
FSR is proud to announce the launch of the Ignore No More: ACTe Now! (Advance Clinical Trials for Equity in Sarcoidosis) campaign. The goals of this campaign are to increase representation of Black American sarcoidosis patients in clinical trials, raise awareness of...
“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’...
On April 21, 2022, The Foundation for Sarcoidosis Research (FSR) hosted a virtual Patient Listening Session on Pulmonary Sarcoidosis with the US Food and Drug Administration (FDA). FDA Patient Listening Sessions are small, informal, non-regulatory, non-public...
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...
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...
Act Now to Protect Drug Development. As part of the budgeting process, Congress is discussing cutting back the Orphan Drug Tax Credit for pharmaceutical companies. Most of the drugs in sarcoidosis are not FDA-approved for sarcoidosis, but are repurposed from...
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...
The Foundation for Sarcoidosis Research (FSR) is excited to announce the official launch of the first of its kind African American Women & Sarcoidosis National Campaign (AAWS). African American women experience the highest incidence of sarcoidosis in the US as...