Stay up-to-date on FSR’s latest activities and learn about the ways that FSR is driving progress and accelerating research towards a cure.
FSR launched the Ignore No More: ACTe Now! Campaign (Advance Clinical Trials for Equity in Sarcoidosis) to address the underrepresentation of Black Americans in clinical trials. As part of the campaign, FSR conducted the first of its kind, IRB-approved national patient survey for Black Americans to better understand the challenges and experiences Black Americans with sarcoidosis face as it pertains to clinical trials and their disease journeys. FSR also conducted a Key Opinion Leaders Thought Workshop (KOL) and Patient Focus Group to explore the findings in greater depth and to identify recommendations for how to improve clinical trial access and overall care of Black sarcoidosis patients.
Some recommendations that emerged include building a blueprint for clinical trial design that increases access and supports diversity, clinical trial navigation and support specifically targeted for Black patients, and educational toolkits to better educate patients and physicians about trial opportunities and engagement. Though this campaign was specific to Black Americans with sarcoidosis the learnings are relevant to improving access to clinical trials for all Black Americans.
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FSR Blog
Meet Sarcoidosis Experts in L.A.
Presentations included: Sarcoidosis Presentation and Diagnosis Bob Baughman, MD of University of Cincinnati Therapy for the Inflammation: Prednisone to Remicade and Beyond W. Ennis James,Learn More
San Francisco Research Studies Looking for Participants
UCSF Sarcoidosis Studies are Recruiting! San Francisco based studies are looking for people diagnosed with sarcoidosis in or near the bay area to joinLearn More
#CuresNow: Time is Running Out for the 21st Century Cures Act
Time is running out for an important piece of legislation that has recently stalled in the Senate. The 21st Century Cures Act was passedLearn More
Partnership Spotlight: FasterCures
As a foundation, our goals start with ensuring that patients are getting accurate educational information and end with our ultimate mission: stop sarcoidosis. Some ofLearn More
FSR Supports 9/11 Heroes and Zadroga Act
September 11, 2001 is a date that Americans have vowed never to forget. Many people still bear the emotional and physical scars from theLearn More
Why Clinical Trials Fail: FSR’s New Initiative to Bridge Gap between Industry Leaders, Researchers, and Patients
Guest post written by Sue Bhalla As the latest industry statistics show, an estimated 90% of drugs that reach the testing phase of clinical trialsLearn More
FSR Executive Director presents at the National Black Nurses Association Sarcoidosis Presentation
We are excited to announce that Ginger Spitzer, Executive Director for the Foundation for Sarcoidosis Research, will present a session at the 44th Annual NBNALearn More
Support FSR When You Shop Online
Shopping online is an easy way to get everything you need in one place. You can get virtually anything- clothes, books, movies, even groceries-Learn More
Pokemon Go and Sarcoidosis? Gamifying Your Health
Right now, it’s almost impossible to go a full day without hearing or reading about Pokemon Go. Nintendo has created a big buzz byLearn More
Saddling Up for Sarcoidosis and Remembering Jerry Grimes
Sickness and tragedy come knocking all too often. No one knows the life interruption that falls in the wake for so many as theyLearn More
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