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FSR Updates

Stay up-to-date on the Foundation for Sarcoidosis (FSR)'s latest activities and learn about the ways that FSR is driving progress and accelerating research towards a cure.

FSR Reports

FSR has undertaken a comprehensive process to develop a new Research Agenda that will guide its funding priorities and strategic direction. This initiative comes at a critical time, as sarcoidosis affects approximately 1.2 million people worldwide, and approximately 175,000-200,000 in the United States. Sarcoidosis was first discovered over 150 years ago and yet little progress has been made toward a significant breakthrough in the scientific understanding of the disease and the therapeutic options.

To address this concern, FSR has endeavored to create a robust Research Agenda aimed at addressing gaps in sarcoidosis research. This Research Agenda represents a strategic and measurable approach toward the achievement of our mission to accelerate progress toward improved treatments and a possible cure for sarcoidosis.

On October 28, 2024, the Foundation for Sarcoidosis Research hosted the Externally-Led Patient Focused Drug Development (EL-PFDD) Meeting—an interactive, virtual event where patients and caregivers shared their experiences, unmet needs, and treatment priorities.

The resulting 50-page Voice of the Patient Report captures these insights, reflecting the real-world impact of sarcoidosis and guiding future research and therapy development. This report amplifies the voices of patients and caregivers, providing valuable perspective for healthcare providers, researchers, and drug developers to ensure that patient needs remain at the center of progress.

FSR is excited to announce the release of The FSR-SARC Patient Registry Report (FSR Registry Report), “Living with Sarcoidosis – Insights from the FSR-SARC Patient Registry (FSR Registry)."

This global, patient-reported outcomes program incorporates dates from 2015-2025. For a decade, the FSR Registry has gathered crucial information from individuals living with sarcoidosis around the world. This online patient registry is helping researchers uncover patterns in the disease and identify ways to improve care and quality of life.

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FSR Blog

San Francisco Research Studies Looking for Participants

September 22, 2016

UCSF Sarcoidosis Studies are Recruiting! San Francisco based studies are looking for people diagnosed with sarcoidosis in or near the bay area to joinLearn More

#CuresNow: Time is Running Out for the 21st Century Cures Act

September 19, 2016

Time is running out for an important piece of legislation that has recently stalled in the Senate. The 21st Century Cures Act was passedLearn More

Partnership Spotlight: FasterCures

September 14, 2016

As a foundation, our goals start with ensuring that patients are getting accurate educational information and end with our ultimate mission: stop sarcoidosis. Some ofLearn More

FSR Supports 9/11 Heroes and Zadroga Act

September 11, 2016

September 11, 2001 is a date that Americans have vowed never to forget. Many people still bear the emotional and physical scars from theLearn More

Why Clinical Trials Fail: FSR’s New Initiative to Bridge Gap between Industry Leaders, Researchers, and Patients

August 5, 2016

Guest post written by Sue Bhalla As the latest industry statistics show, an estimated 90% of drugs that reach the testing phase of clinical trialsLearn More

FSR Executive Director presents at the National Black Nurses Association Sarcoidosis Presentation

July 29, 2016

We are excited to announce that Ginger Spitzer, Executive Director for the Foundation for Sarcoidosis Research, will present a session at the 44th Annual NBNALearn More

Support FSR When You Shop Online

July 22, 2016

Shopping online is an easy way to get everything you need in one place. You can get virtually anything- clothes, books, movies, even groceries-Learn More

Pokemon Go and Sarcoidosis? Gamifying Your Health

July 22, 2016

Right now, it’s almost impossible to go a full day without hearing or reading about Pokemon Go. Nintendo has created a big buzz byLearn More

Saddling Up for Sarcoidosis and Remembering Jerry Grimes

July 18, 2016

Sickness and tragedy come knocking all too often. No one knows the life interruption that falls in the wake for so many as theyLearn More

KISS 5K Photos & Results

May 10, 2016
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