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!
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Sarcoidosis Overview Resources
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.
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:
2018 Conference Recordings:
Miami, FL – February 24
- Sarcoidosis Overview – Dr. Gregory Holt
- Liver + GI Concerns- Dr. Cynthia Levy
Pittsburgh, PA – March 3
- Neurological Concerns- Dr. Jinny Tavee
Chicago, IL – April 14
- Sarcoidosis 102- Dr. Elyse Lower
- Sarcoidosis Skin Disease- Dr. Misha Rosenbach
- Neurosarcoidosis- Dr. Jinny Tavee
- Cardiac Sarcoidosis- Dr. Alex Chicos
- Emerging Therapies and Current Research- Dr. Bob Baughman
2017 Conference Recordings:
Jacksonville, FL – November 11
- Sarcoidosis Overview – Dr. Mehdi Mirsaedi, University of Miami
- Complications of Sarcoidosis – Dr. Divya Patel, University of Florida Health
- Sarcoidosis Treatments – Dr. Leslie Cooper, Mayo Clinic Jacksonville
Ann Arbor, MI – September 30
- Sarcoidosis: An Overview – Dr. Manuel Ribeiro, Cleveland Clinic
- Cardiac Sarcoidosis – Dr. Thomas Crawford, University of Michigan
- Neurosarcoidosis – Dr. Larry Junck, University of Michigan
- Disease Management & Treatment Options – Dr. Todd Koelling, University of Michigan
Seattle, WA – July 29
- Sarcoidosis Overview and Treatment – Dr. Ganesh Raghu, University of Washington
- Ophthalmologic Concerns– Thella Leveque, University of Washington
- Neurosarcoidosis– Jeff Gelfand, University of California San Francisco
- Cardiac Sarcoidosis– Richard Cheng, University of Washington
Washington, DC – May 22
Hershey, PA – April 8
Sarcoidosis Presentation & Diagnosis – Lisa Maier, National Jewish Health
- Cutaneous Sarcoidosis – Misha Rosenbach, University of Pennsylvania
- Parasarcoidosis Syndromes – Marc Judson, Albany Medical College
- Treatment Options – Elliott Crouser, Ohio State University
- Future of Research – Daniel Culver, Cleveland Clinic
Dallas, TX – March 13
- Treatment Options – Dr. Bob Baughman, University of Cincinnati
- Cardiac Sarcoidosis – Dr. Edward Miller, Yale University
- Pulmonary Sarcoidosis – Dr. Connie Hsia, UT Southwestern
- Rheumatological Concerns – Dr. Fatima Ezzati, UT Southwestern
Phoenix, AZ – February 3
- Sarcoidosis Overview and Sleep Complications – Ken Knox, University of Arizona Tucson
- Cardiac Sarcoidosis – Jennifer Cook, University of Arizona Tucson
- How to Get the Most out of Your Neurology Clinic Visit – Holli Horak, University of Arizona Tucson
- The Future of Sarcoidosis Research and Genetics – Dr. Skip Garcia, University of Arizona Tucson
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
Wellness and Mental Health Resources
Insurance and Financial 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!