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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 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

FSR Launches the Stand Up for Sarc National Campaign for April’s Awareness Month

April 5, 2023

The Foundation for Sarcoidosis Research (FSR) is proud to launch the Stand Up for Sarc Campaign this April as part of National Sarcoidosis Awareness Month. Sarcoidosis (pronouncedLearn More

(FSR) Trains 60 Patient Volunteer Leaders to Provide Support and Education, and Improve Patient Outcomes for those Impacted by Sarcoidosis

March 16, 2023

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

FSR Named an Official Charity Partner of the 2023 TCS New York City Marathon

March 16, 2023

Foundation for Sarcoidosis Research (FSR) has been named an Official Charity Partner for the 2023 TCS New York City Marathon, which takes place on Sunday,Learn More

FSR Inaugural Sarcoidosis Crystal Awards Gala to Honor Exceptional Individuals in the World of Sarcoidosis

March 1, 2023

The Foundation for Sarcoidosis Research (FSR), the leading international nonprofit organization dedicated to finding a cure and improving care for sarcoidosis patients, announces FSR’s InauguralLearn More

Patient Perspective: Oxy, Fentanyl, and the Opioid Crisis

February 27, 2023

– Rebecca Stanfel   FSR Speakers Bureau member and Patient Advocate, Rebecca Stanfel, shares her experience with pain medications as part of her sarcoidosisLearn More

The Dripping Faucet of Sarcoidosis

February 9, 2023

  I had a dripping faucet in my home that was repaired recently. This annoyance somehow made me think about sarcoidosis and how itLearn More

Take Our Quiz to Find Out Your Volunteer Style

December 27, 2022

What’s your volunteer style? Do you want to make a difference in sarcoidosis but not sure exactly what role would suit you best? TakeLearn More

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