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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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Seek Answers Inspire Results -Rick’s Story

April 30, 2015
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The Foundation for Sarcoidosis Research will be attending Rare Disease Week on Capitol Hill

February 18, 2015

Global nonprofit Foundation for Sarcoidosis Research announced today that it will be attending the upcoming Rare Disease Week on Capitol Hill from February 23Learn More

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Learn how you can change the face of sarcoidosis research

February 18, 2015

The Foundation for Sarcoidosis Research announced they are entering their second year with FSR Sarcoidosis Patient Registry. The FSR Sarcoidosis Patient Registry was established inLearn More

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Sarcoidosis Week at ATS

February 3, 2015

Current Progress in Sarcoidosis Research Attend the webinar Feb 10th at 2pm EST We have partnered with the American Thoracic Society for their SarcoidosisLearn More

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Q&A Session from Meet the Experts in San Diego

June 12, 2014

Thank you for all that attended out Meet the Experts event in San Diego at the American Thoracic Society conference. For those of youLearn More

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Join our Meet the Experts!

March 31, 2014

If you want to join us at our meet the experts event this May in San Diego be sure to email us your RSVPLearn More

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ATS Lung Disease Week Webinar

March 10, 2014
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Rare Disease Day Survey Results

February 20, 2014

February 28th is Rare Disease Day! We partnered with our online Inspire community to conduct a survey to help better understand the quality ofLearn More

Hike for Lung Health

September 3, 2013

Hike for Lung Health 2013 September 22, 2013 is the 7th annual Hike for Lung Health event sponsored by the Respiratory Health Association. TheLearn More

Patient of the Week- Emily Pomkala

August 30, 2013

For our final week we honor Emily Pomkala. We could not think of a better person to end our month with because of herLearn More

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