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 info@stopsarcoidosis.org or call 312-341-0500.
Sarcoidosis Overview Resources
Patient Education and Research Agenda
Pulmonary sarcoidosis:
Understanding the Stages of Pulmonary Sarcoidosis
Neurosarcoidosis:
Sarcoidosis and the Nervous System
Cardiac sarcoidosis:
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.
Advocacy Resources
Wellness and Mental Health Resources
Online Support Community: Stop Sarcoidosis
Blog: Self-Care for Sarcoidosis Warriors
National Alliance on Mental Illness
American Psychiatry Association
National Association of Behavioral Healthcare (NABH)
StartYourRecovery.org (provides helpful information for people who are dealing with substance use issues)
American Psychological Association
Article: Chronic Illness & Mental Health – National Institute of Mental Health
Article: Chronic Illness and Depression – Cleveland Clinic
Blog: Tips for Managing Chronic Illness (Including Mental Health) – Psychology Today
Blog: The Part of Chronic Illness We Don’t Talk About Openly (But Should) – The Mighty
Disability Resources
Insurance and Financial Resources
Blog: Affording Pricey Prescriptions Navigating Insurance Plans as a Rare Disease Patient (Video Series)
The Assistance Fund – Sarcoidosis Copay Assistance Program
Boomer Esiason Foundation (BEF) – Lung Transplant Grant Program
Chai Lifeline – Hospital and Home-Based Services
Good Days – Premium Assistance
Hill-Burton Free and Reduced-Cost Health Care
Love Light Compassion Foundation
National Heart Lung and Blood Institute – Patient Recruitment for Studies Conducted by NHLBI, NIH
Bilingual Resources
Transportation Resources
Assistive Technology & Medical Supplies Resources
Resources for Veterans and First Responders
Occupation-Based Assistance Programs
American Guild of Musical Arts – Relief Fund – musical arts
American Society of Journalists and Authors (ASJA) – Writers Emergency Assistance Fund – non-fiction writers
Blues Foundation – HART Find (Handy Artists Relief Trust) – blues musicians
Jazz Foundation of America – Housing and Emergency Assistance – jazz musicians
Local 47 Musicians Relief Fund – musicians
MPTF Temporary Emergency Financial Assistance – entertainment industry
Music Maker Relief Foundation – musicians
Musicians Foundation, Inc. – musicians
Sweet Relief Musicians Fund – musicians
Opry Trust Fund – country musicians
St. Christopher Truckers Development & Relief Fund – truck drivers
Wings Foundation – American Airlines flight attendants
Resources for Transplant Patients
Resources for Children with Chronic Illness
Lodging Resources
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
- Figuring Out If You Have Sarcoidosis – Dr. Divya Patel
- Monitoring: What You Need to Know – Dr. Manuel Riberiro Neto
- Sarcoidosis and Prednisone – Dr. Bob Baughman
- Prednisone Alternatives – Dr. Nabeel Hamzeh
Durham, NC – March 2
- Sarcoidosis Overview – Dr. Ogugua Ndili Obi
- Cardiac Sarcoidosis – Dr. Brian Houston
- Sarcoidosis Associated Pulmonary Hypertension – Dr. Veeranna Maddipati
- Neurosarcoidosis – Dr. Brandon Moss
- Sinonasal Sarcoidosis – Dr. Ahmed Sesay
- Cutaneous and Ocular Manifestations of Sarcoidosis – Dr. Chris Mosher
- Treatment Options – Dr. Craig Rackley
Birmingham, AL – January 26
- Sarcoidosis Overview – Dr. Joseph Barney
- Neurosarcoidosis – Dr. Brandon Moss
- Cutaneous Sarcoidosis – Dr. Lauren Graham
- Pulmonary Sarcoidosis – Dr. Pilar Acosta Lara
- Cardiac Sarcoidosis – Dr. Ramey Marshell
- Ocular Sarcoidosis – Dr. Amol Sura
- Sarcoidosis-related Fatigue and Depression – Lanier O’Hare
- Rheumatologic Concerns – Dr. Angelo Gaffo
2018 Conference Recordings:
St. Louis, MO – November 3
- Sarcoidosis Overview- Dr. Ravi Nayak
- Neurosarcoidosis – Dr. Brandi Baker
- Musculoskeletal Sarcoidosis- Dr. Deborah Parks
- Cardiac Sarcoidosis – Dr. Mary Gleva
- Treatment Options- Dr. Adam Anderson
- Advanced Sarcoidosis- Dr. Bob Baughman
Cleveland, OH – September 22
- Sarcoidosis Overview- Dr. Manuel Ribeiro Neto
- Neurosarcoidosis – Dr. Mary Willis
- Ocular Sarcoidosis- Dr. Sumit Sharma
- Cardiac Sarcoidosis- Dr. Christine Jellis
- Cardiac Electrophysiology- Dr. Tom Callahan
- Advanced Sarcoidosis- Dr. Daniel Culver
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
Pittsburgh, PA – March 3
- Neurological Concerns- Dr. Jinny Tavee
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Emerging Therapies and Current Research- Dr. Catherine Bonham
Miami, FL – February 24
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
ATS Meet the Experts Q&A Panel
Hershey, PA – April 8
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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
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.