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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 Doubles Investment in Cardiac Sarcoidosis Research with $200,000 in Grants to Advance Diagnostic and Treatment Breakthroughs

December 2, 2024

The Foundation for Sarcoidosis Research (FSR) is proud to announce the recipients of the 2024 FSR Cardiac Sarcoidosis Grant, providing $200,000 in funding toLearn More

FSR receives confirmation from the Department of Labor ensuring patient access to FMLA for participation in clinical trials

November 18, 2024

In August of 2023, the Foundation for Sarcoidosis Research (FSR) submitted a Request for Opinion Letter on Clinical Trials and the Family and MedicalLearn More

Nearly 350 Patients Participate in the Foundation for Sarcoidosis Research Externally Led Patient-Focused Drug Development Meeting with the FDA

October 31, 2024

On October 28, 2024, the Foundation for Sarcoidosis Research (FSR) hosted a groundbreaking Externally Led Patient-Focused Drug Development (EL-PFDD) meeting on sarcoidosis with theLearn More

12 Years of Sarcoidosis Advocacy

October 25, 2024

“I was diagnosed with Cutaneous Sarcoidosis in July of 2011. When I was diagnosed, I was alone and didn’t know what this disease wasLearn More

Sarcoidosis…and the Sound of Silence

September 17, 2024

  These last few weeks have been very rough on me. I feel as if I have been going through both a spiritual andLearn More

FSR Expands Scientific Advisory Board with 14 New Experts

August 28, 2024

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

Foundation for Sarcoidosis Research Awards $300,000 to Support Early-Career Investigators Through the Sarcoidosis Research Fellowship Grant

July 24, 2024

The Foundation for Sarcoidosis Research (FSR) is pleased to announce that Dr. Greer Waldrop, University of California, San Francisco, and Dr. Miles Hagner, UniversityLearn More

I Had a Heart Transplant Due to My Cardiac Sarcoidosis

July 23, 2024

Before my heart disease journey began in Spring 2019, I was a passionate and dedicated educator and led a dynamic and fulfilling life. ILearn More

Blog: My Journey with Neurosarcoidosis

July 9, 2024

My journey with neurosarcoidosis began on May 5, 2013, when I woke up in the morning with the worst headache of my life, lightLearn More

Sarcoidosis Test Aims to Speed, Simplify Diagnostic Process

June 19, 2024

Sarcoidosis is difficult to diagnose for a variety of reasons, Mary McGowan, CEO of the Foundation for Sarcoidosis Research, told Diagnostics World. For one,Learn More

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