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FSR Updates

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

FSR partners with Walgreens stores in Alabama to raise awareness of sarcoidosis and the importance of all impacted by heart and lung disease to get vaccinated

September 15, 2023

Beginning September 16th, Walgreens, a pharmacy and retail leader who plays a critical role in the U.S. healthcare system by providing a wide rangeLearn More

FSR Graduates Second Class of New Volunteers from 11 States to Raise Awareness and Improve Clinical Outcomes for Those Living with Sarcoidosis

September 14, 2023

Foundation for Sarcoidosis Research (FSR), the leading international nonprofit organization dedicated to finding a cure and improving care for sarcoidosis patients, conducted a two-dayLearn More

Living with ILD: My Sarcoidosis Journey

September 13, 2023

My journey with Interstitial Lung Disease (ILD) started about 15 years ago, although I did not know it at the time, nor did theLearn More

Learn the Facts About Interstitial Lung Disease on ILD Day, Sept. 13

September 5, 2023

With more than 250,000 Americans living with interstitial lung disease (ILD) and pulmonary fibrosis (PF), nine organizations are joining forces to present the thirdLearn More

The Time is NOW for Sarcoidosis

August 17, 2023

“Everything that the foundation (FSR) is doing is moving the needle forward, and so that makes me very hopeful.”  – Jeryl Prescott Gallien, SarcoidosisLearn More

FSR Awards Dr. Christen Vagts, University of Illinois Hospital and Clinic, Fellowship Grant for 2023–2025

July 26, 2023

The Foundation for Sarcoidosis Research (FSR) is pleased to announce that the FSR Sarcoidosis Research Fellowship for 2023-2025 is being awarded to Dr. ChristenLearn More

FSR Appoints Two New Members, Calvin Harris Jr., CPA and Joel D. Rosen, Esq., to Board of Directors

July 13, 2023

The Foundation for Sarcoidosis Research (FSR) is pleased to announce the appointment of Calvin Harris Jr., CPA and Joel D. Rosen, Esq. to theLearn More

FSR Releases White Paper and Hosts Congressional Briefing on Advancing Clinical Trial Equity for Black Patients with Sarcoidosis

May 22, 2023

Foundation for Sarcoidosis Research (FSR), the leading international organization dedicated to elevating research, raising awareness and providing support for individuals affected by sarcoidosis, isLearn More

aTyr Spotlight: Accelerating Sarcoidosis Research and Supporting the Sarcoidosis Community

April 26, 2023

Recently, we asked our dedicated and generous Sarcoidosis Awareness Campaign Gold Level Sponsor, aTyr Pharma, Inc., to share more about their passion for raisingLearn More

FSR Team Member Runs in Boston Marathon for Rare Disease Awareness

April 26, 2023

Rebecca Epstein, Senior Research Manager for Foundation for Sarcoidosis Research, participated in the 2023 Boston Marathon on April 17, 2023, running with the NationalLearn More

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