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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

Blog: Addressing Healthcare Issues that Disproportionately Affect Black Americans

October 25, 2022

  FSR Patient Advisory Committee and ACTe Now Committee Member, Calvin Harris, shares the importance of increasing awareness and representation of Black patients inLearn More

The Importance of the FSR Patient Registry

October 20, 2022

If you have sarcoidosis, you MUST join the Foundation for Sarcoidosis Research (FSR) Patient Registry. With less than 200,000 of us diagnosed each year,Learn More

Transitioning to Medicare from Employer Paid Insurance – While on Infliximab

October 11, 2022

Most of us in our 60’s start looking forward to the day when we are no longer dependent on employer paid health insurance orLearn More

FSR Launches Its First-Ever Clinical Trial Equity Initiative for Black And African Americans

October 5, 2022

FSR is proud to announce the launch of the Ignore No More: ACTe Now! (Advance Clinical Trials for Equity in Sarcoidosis) campaign. The goals ofLearn More

On My Diagnosis Anniversary, I’m Grateful for a Foundation That Has Given Me So Much

September 30, 2022

FSR Patient Advisory Committee and ACTe Now Committee Member, Calvin Harris shares the impact FSR and his treatment team at FSR-GSCA Member Clinic John’sLearn More

Having a COVID Response Plan as Someone Living with Sarcoidosis

September 1, 2022

Over the past two years, this Global Pandemic has been changing the way we all exist and go about living our ‘normal’ daily livesLearn More

FSR Awards 2022-2024 Sarcoidosis Research Fellowship to Dr. Nancy Lin of National Jewish Health

August 11, 2022

FSR is pleased to announce that the FSR Sarcoidosis Research Fellowship for 2022-2024 is being awarded to Dr. Nancy Lin from National Jewish Health,Learn More

Why I am Attending the Global Patient Summit

July 25, 2022

Where will you be on July 30 and 31, 2022?   For those of us with sarcoidosis, the above dates will be important onesLearn More

FSR holds a Virtual FDA Patient Listening Session with over 50 FDA attendees

July 18, 2022

On April 21, 2022, The Foundation for Sarcoidosis Research (FSR) hosted a virtual Patient Listening Session on Pulmonary Sarcoidosis with the US Food andLearn More

FSR Welcomes Michael Klingher to its Board of Directors

July 6, 2022

FSR is pleased to announce the appointment of Michael Klingher to the FSR Board of Directors.  Klingher has over 35 years’ experience as anLearn More

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