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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

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FSR to Host New Orleans Sarcoidosis Conference!

February 12, 2016

The Foundation for Sarcoidosis Research will host a conference for patients on February 27, 2016 in New Orleans, Louisiana. Please join FSR, Tulane University,Learn More

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The Rick Passaglia Memorial Fund

December 16, 2015

 We are heartbroken.  We are mourning the loss of our dear friend Rick Passaglia, who lost his battle with sarcoidosis on Monday. Rick wasLearn More

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FSR partners with the Investigator Databank!

December 8, 2015

The Investigator Databank is a global collaboration between Janssen, Lilly, Merck, Pfizer and Novartis (with more companies to come) to share investigator information thatLearn More

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SAKURA Phase III Study

November 13, 2015

The SAKURA study is a Phase III, multinational, double-masked trial investigating the safety and efficacy of DE-109 for the treatment of non-infectious uveitis ofLearn More

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Attend FSR’s Fall Events

September 19, 2015

FSR is hosting events all over the country this fall. Mark your calendars and join us for these upcoming fall events: Hike for Lung HealthLearn More

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Neurosarcoidosis Meeting at Washington University in St. Louis

July 8, 2015

At this meeting, experts who have significant experience with managing neurosarcoidosis will gather to share their latest observations, then participate in a planning retreatLearn More

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Foundation for Sarcoidosis Research joins elite group of medical research foundations

May 14, 2015

FSR is proud to announce our membership acceptance into the elite group of medical research foundations represented by Faster Cures TRAIN. These selected TRAINLearn More

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We are speaking at the DIA 51st Annual Meeting

May 12, 2015

The Foundation for Sarcoidosis Research’s Executive Director Ginger Spitzer is speaking at the 51st Annual DIA 2015 Meeting. She will be speaking about theLearn More

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Join the conversation at the National Heart, Lung and Blood Institute!

May 6, 2015

The National Heart, Lung and Blood Institute is gathering ideas for the most compelling scientific priorities in the four NHLBI Strategic Goals to address overLearn More

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May 4, 2015

Join us! For the 9th Annual American Thoracic Society Public Advisory Roundtable (PAR) FREE patient/family forum. SATURDAY MAY 16, 2015 from 10:00 a.m. to 2:00 p.m. SheratonLearn More

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