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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Online Support Community Inspire Hits 1 Million Members!
FSR’s partner Inspire, which serves as the platform for our online support group- “Stop Sarcoidosis”- has hit 1 million members! Inspire provides a spaceLearn More
Join the Team: Ideas for Fundraising
As a small nonprofit, FSR relies on independent fundraising from generous supporters like you. Independent events have consistently contributed toward FSR’s mission to fund criticalLearn More
Healthcare Innovation Under the New Administration
With the upcoming inauguration of the 45th President of the United States, the country is preparing for big changes, especially when it comes to healthcare. The potential repeal of the Affordable Care Act threatens some provisions for chronic and rare disease patients. For example, the ACA prohibited insurance companies from setting lifetime caps on medical expenses …
Growing the Movement: Team Aussie
Steve McLeod, a sarc warrior, leader of Team Aussie, and supporter of FSR, was recently featured in the Courier Mail, a daily newspaper inLearn More
VIDEO: Mindfulness Webinar
Dr. Lesley Ann Saketkoo, MD, MPH, Associate Professor of Medicine at Tulane University and a strong believer in the power of mindfulness in overcomingLearn More
FSR Well-Represented at SCOPE 2017
FSR’s Ginger Spitzer will be presenting at the 8th annual Summit for Clinical Ops Executives, or SCOPE in Miami, FL later this month. SCOPELearn More
Baltimore Clinical Trial for Neurosarcoidosis Patients
For all neurosarcoidosis patients, a clinical trial in the Baltimore area entitled, “Clinical Biomarkers of Disease Activity and Treatment Response in Patients with CNSLearn More
21st Century Cures Passed…What Comes Next?
The final version of the 21st Century Cures Act was signed into law by Obama on Dec. 13, 2016. The bill has 17 titles with roughly 300 subsections, addressing a wide variety of current needs in health and medicine. The campaign #CuresNow helped build the momentum that got the bill passed, but how soon can patients really expect results- especially when there are almost 6,500 rare diseases with no known cure?
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