Oct 20, 2022
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...Topics: Living with Sarcoidosis/ Research/ Take Action
Oct 11, 2022
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...Topics: Advocacy/ Living with Sarcoidosis/ Patient Voices/ Take Action
Sep 30, 2022
“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...Topics: Awareness/ Living with Sarcoidosis/ Patient Voices
Sep 1, 2022
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’...Topics: Awareness/ COVID-19/ Living with Sarcoidosis/ Patient Voices
May 24, 2022
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...Topics: Awareness/ Living with Sarcoidosis/ Patient Voices
May 6, 2022
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...Topics: Awareness/ Living with Sarcoidosis/ Online Educational Content
Apr 8, 2022
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...Topics: Awareness/ Living with Sarcoidosis/ News/ Online Educational Content
Feb 9, 2022
FSR Sarcoidosis Support Group In response to feedback received and a growing need to support patients where they are, FSR has launched an online peer-led support group for people living with sarcoidosis. FSR also offers additional, more localized community group...Topics: FSR Events/ Living with Sarcoidosis/ Online Educational Content
Feb 2, 2022
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...Topics: Living with Sarcoidosis/ Patient Voices
Jan 20, 2022
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...Topics: Living with Sarcoidosis/ Patient Voices
