The Foundation for Sarcoidosis Research knows that patients and their loved ones often have to search desperately for answers after receiving a diagnosis of sarcoidosis. Like many other rare diseases, there can be a lack of accurate and up-to-date information available.

FSR has always prioritized filling that gap. Founded by a patient and her husband, our organization itself was a result of the lack of answers about sarcoidosis. Our Patient Resources and Education Program (PREP) has already helped countless patients find answers and receive the help they need. As part of this patient-centered program, we hold numerous patient education conferences across the U.S. each year, host online webinars led by experts in the field, and provide educational materials- both online and hard copy- to thousands of individuals worldwide. In addition, our resources can help patients find specialists in their region who are knowledgeable on sarcoidosis, as well as connect with local support groups.

This  page is meant to be a dynamic resource for patients, caretakers, and even physicians who are looking for information on the disease itself, as well as treatment options, health insurance, disability or veterans benefits, and more. This page will be rapidly expanding and evolving so be sure to check back for new material!

Resources Panel

Click through the tabs below to find the information you’re looking for.

If you can’t find what you need, we’re here for you!
Email or call 312-341-0500.

Sarcoidosis Overview Resources

What is Sarcoidosis Flyer

Patient Education and Research Agenda

Sarcoidosis Overview Booklet

Pulmonary sarcoidosis:

Understanding the Stages of Pulmonary Sarcoidosis


Sarcoidosis and the Nervous System

Cardiac sarcoidosis:

Sarcoidosis and the Heart Blog: Cardiac Sarcoidosis FAQs


Skin sarcoidosis:

Blog: Skin Sarcoidosis FAQs For more information on specific manifestations of sarcoidosis, see our conference and webinar recordings below with presentations from sarcoidosis experts in topics like cardiac sarcoidosis, neurosarcoidosis, skin sarcoidosis, parasarcoidosis syndromes (fatigue, small fiber neuropathy, etc.) and more.

Treatment Resources

FSR’s Sarcoidosis Treatment Protocol

Telehealth ILD Patient Checklist – this comprehensive checklist, developed by a patient advocacy board that FSR participates in with our partners at Boehringer Ingelheim and numerous other advocacy groups, helps patient prepare for a teleheath appointment with their provider, which is more common during COVID-19

Conference Recordings

FSR makes it a priority to record and share videos of our patient education conferences- this way, all patients and caregivers can access the invaluable information that is shared by our expert panelists at conferences. Below are our archived conference recordings:

2019 Conference Recordings:

Iowa City, Iowa – April 13
Durham, NC – March 2
Birmingham, AL – January 26

2018 Conference Recordings:

St. Louis, MO – November 3
Cleveland, OH – September 22
Chicago, IL – April 14
Pittsburgh, PA – March 3
Miami, FL – February 24
2017 Conference Recordings:
Jacksonville, FL – November 11
Ann Arbor, MI – September 30
Seattle, WA – July 29
Washington, DC – May 22

ATS Meet the Experts Q&A Panel

Hershey, PA – April 8
Dallas, TX – March 13
Phoenix, AZ – February 3

Webinars from 2019:

Sarcoidosis 102 – Dr. Catherine Bonham, University of Virginia

Webinars from 2018:

Exercise – Great Medicine to Improve Your Health! – Dr. Jonathan Whiteson, NYU’s Rusk Rehabilitation

Sarcoidosis 102 – Dr. Bob Baughman, University of Cincinnati

Webinars from 2017:

Small Fiber Neuropathy and Ongoing Clinical Trials – Dr. Daniel Culver, Cleveland Clinic

Sarcoidosis Treatment and the Future of Research – Dr. Daniel Culver, Cleveland Clinic

Webinars from 2016:

Treatment and Fatigue in Sarcoidosis – Dr. Bob Baughman, University of Cincinnati

Mindfulness: Symptom Management and Better Living with a Chronic Illness – Dr. Lesley Ann Saketkoo, Tulane University

Webinars from 2015 and Earlier

Current Progress in Sarcoidosis Research – Dr. Wonder Drake, Vanderbilt University School of Medicine

Exploring Treatment Options – Dr. Bob Baughman, University of Cincinnati

Neurosarcoidosis – Dr. Barney Stern, University of Maryland

Disability Resources
Resources for Children with Chronic Illness
Wish Grants and Baskets Resources

If you’d like to suggest a resource that you think would benefit patients, tell us your idea and we will get to work finding answers for you!

To request materials printed materials are sent to you for educational events or fundraising events benefiting FSR, click here.