FSR Clinical Studies Network


At a Glance
  • Status: Active Consortium
  • Year Launched: 2000
  • Initiating Organization: FSR
  • Initiator Type: Nonprofit foundation
  • Rare disease
  • Disease focus:
    Sarcoidosis
  • Location: North America

Abstract

FSR provides funding and collaborations for research and initiatives which focus on the understanding of sarcoidosis, addresses the causes of the disease, counters the suffering of patients, and advances the potential for a cure. Through collaborations and partnerships with the pharmaceutical industry, biotech companies, medical institutes and professionals, academic institutes, researchers, and patients from across the globe, FSR is producing game-changing initiatives toward a cure.

Mission

The Foundation for Sarcoidosis Research is the nation’s leading nonprofit organization dedicated to finding a cure for this disease and to improving care for sarcoidosis patients. Since its establishment in 2000, FSR has fostered over $3 million in sarcoidosis-specific research efforts and has worked diligently to provide resources to thousands. In the years ahead, the Foundation looks forward to increasing their investment to find innovative breakthroughs, which will provide treatments, therapies, and a cure for the disease.

Consortium History

Click here to view the history of FSR

Structure & Governance

FSR is a non-profit organization headed by a board of directors as well as a scientific advisory board.

Financing

Each year, literally hundreds of patients, corporations, small businesses, foundations, and other generous individuals help FSR raise awareness of sarcoidosis and funds to support much-needed research. Whether with smaller gifts or major grants, in-kind donations or extensive fundraisers, each of them has contributed in some significant way to our success. 

For a list that recognizes donations of $500 or more, click here.

Patient Engagement

More than 14,000 members from all 50 states and nearly 80 countries have joined FSR’s free Stop Sarcoidosis Online Support Community. Thousands more are helped through in-person support groups under the umbrella of FSR.
FSR strongly believes that the causes of sarcoidosis, and ultimately a cure, will be uncovered through rigorous and extensive scientific research fueled in part by patient engagement. The Patient Ambassador Program puts that belief into action. FSR Patient Ambassadors are selected across the country to work closely with FSR staff to empower patients, facilitate grassroots outreach, advocate on the local and national level, support FSR programs, and facilitate fundraising for sarcoidosis research. Patient Ambassadors will also help gather and analyze feedback from FSR constituents to make specific recommendations to strengthen the effectiveness of FSR programs.

Impact/Accomplishment

FSR is the nation’s leading nonprofit organization dedicated to finding a cure for this disease and to improving care for sarcoidosis patients. Since its establishment in 2000, FSR has fostered over $3 million in domestic and international research efforts and has worked diligently to provide resources to thousands.

For an archive of FSR’s impact and accomplishments, click here

Points of Contact

Foundation for Sarcoidosis Research
1820 W. Webster Ave., Ste 304
Chicago, IL 60614

312-341-0500

Sponsors & Partners

Americas Association of Sarcoidosis and Other Granulomatous Diseases

American Lung Association

American Thoracic Society

American College of Chest Physicians

Cambridge Healthtech Institute

CureAccelerator

Develop Innovate Advance

European Respiratory Society

FasterCures

Global Genes

National Black Nurses Association, Inc.

National Institutes of Health

National Organization for Rare Diseases

Pulmonary Fibrosis Foundation

PHA

Respiratory Health Association

World Association of Sarcoidosis and other Granulomatous Diseases


Last Updated: 06/20/2017

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