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 Research Agenda - Prioritizing Progress, Catalyzing Innovation

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.

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Voice of the Patient Report

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.

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FSR-SARC Patient Registry Report

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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Posters and Abstracts

2025 American Thoracic Society Annual Meeting _Risk factors associated with Cardiac Sarcoidosis

2024 NORD Poster Breakthrough Summit - The value of partnering with a patient advocacy organization in clinical trial recruitment in sarcoidosis

2025 American Thoracic Society Annual Meeting - National Survey To Understand How Patients With Sarcoidosis Participating In Peer-Led Support Groups Experience Quality Of Life, Self-Efficacy, & Therapeutic Relationships

2025 American Thoracic Society Annual Meeting - Employing a Collaborative Clinical Studies Network Approach to Ascertain Routine Cardiac Screening Practices for Sarcoidosis Patients Across Care Centers

2025 American Thoracic Society Annual Meeting - Patient preferences and priorities for future therapies: An externally led patient-focused drug development meeting on sarcoidosis

2025 WASOG Annual Meeting - Temporal Trends in Health-Related Quality of Life and Health Status in Individuals Living with Neurosarcoidosis: A Nationwide Registry Study

2025 WASOG Annual Meeting - Understanding the patient burden of pain and symptoms in sarcoidosis: learnings from the Foundation for Sarcoidosis Research (FSR) Patient Registry

2025 WASOG Annual Meeting - Building community-informed research funding priorities for a patient advocacy organization focused on sarcoidosis

Partner Joint Publications

Redefining Rigor: Fit-for Purpose Trials to Unlock Rare Disease Therapies_Haystack Project

The Haystack Project, a nonprofit organization dedicated to ensuring patient access to treatment options for the rare and especially ultra-rare community, has released a new white paper titled “Redefining Rigor: Fit‑for‑Purpose Trials to Unlock Rare Disease Therapy,” built from insights gathered at their March 12, 2024 Scientific Workshop. Featuring collaboration among clinicians, researchers, statisticians, industry leaders, and patient advocates, the white paper outlines recommendations to transform FDA approval processes so they better serve ultra‑rare disease communities. FSR was proud to join an esteemed team of leaders in the rare disease space to support the development of this white paper.

Read the white paper.

Steroids and Me: A Practical Tool For Shared Decision-making About Glucocorticoid Tapers

Toolkits

Foundation for Sarcoidosis Research Advocacy and Policy Toolkit

Whether you are someone whose life has changed due to the diagnosis of sarcoidosis, a loved one who is passionate about making the lives of all impacted by sarcoidosis better, or a medical professional dedicated to caring for the sarcoidosis community, you already possess the most powerful tool for shaping legislation and motivating policymaker action– your story!

This toolkit will provide you strategies for getting your story heard and resources for starting your legislative advocacy journey. FSR would like to extend our gratitude to EveryLife Foundation for Rare Diseases for providing us a grant to support the development of this toolkit.

Get the toolkit.