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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 Sarcoidosis Support Group

February 9, 2022

FSR Sarcoidosis Support Group In response to feedback received in 2021 and a growing need to support patients where they are, FSR has launchedLearn More

Addressing Barriers to Care to Improve the Lives of Those with Sarcoidosis

February 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   ILearn More

Act Now to Protect Drug Development

January 24, 2022

Act Now to Protect Drug Development.   As part of the budgeting process, Congress is discussing cutting back the Orphan Drug Tax Credit forLearn More

It’s All About the Journey

January 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 withLearn More

FSR Update 2022: Omicron, Vaccines, and Boosters

January 7, 2022

What to know about Omicron, the vaccines, the boosters, and staying safe    The Omicron variant of the COVID-19 virus is now the dominant variant inLearn More

2021 Year End FSR Highlights

December 28, 2021

This year, the Foundation for Sarcoidosis Research (FSR) has made incredible progress towards our mission thanks to your support!    There have been significant strides made towards accelerating researchLearn More

#GivingTuesday – November 30, 2021

November 29, 2021

#GivingTuesday marks the official start to the charitable giving season! On #GivingTuesday we want to you join us in creating a movement to helpLearn More

FSR Awarded $600,000 Chan Zuckerberg Initiative: Rare As One Cycle 2 Grant in Diversity, Diagnosis, and Clinical Trials

November 3, 2021

We are proud to announce that they have been selected as an awardee for the Chan Zuckerberg Initiative (CZI) Rare As One Cycle 2Learn More

Congratulations to the 2021 FSR Small Research Grant Awardees

October 21, 2021

FSR is pleased to announce the 2021 Small Research Grant Awardees. As part of our mission, FSR accelerates sarcoidosis research through fellowships, small grants,Learn More

Ignore No More: Foundation for Sarcoidosis Research Launches African American Women & Sarcoidosis Campaign

October 12, 2021

The Foundation for Sarcoidosis Research (FSR) is excited to announce the official launch of the first of its kind African American Women & SarcoidosisLearn More

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