November Virtual Sarcoidosis Patient Education Summit

FSR's Virtual Patient Education Summit will provide presentations from expert physicians and researchers, as well as lectures and exercises in lifestyle, emotional well-being, legal and financial matters, and FSR resources. Attendees will be able to choose which presentations to attend based on which are the most relevant to their lives.

There will also be a self-care station and ample opportunities for attendees to relax and recharge between sessions.

November Virtual Patient Education Summit Agenda

Saturday, November 14, 2020 – All times are in Central Standard Time (CST)

7:00 AM Doors open -- look around!

8:00 AM Entering: Welcome!

FSR Founders Andrea and Reading Wilson

8:00-8:50 AM Auditorium A: Sarcoidosis Warrior Roundtable

Moderated by John Carlin

Jessica Reid

Jim Kuhn

Sabrina Sonnier

9:00-9:50 AM Auditorium A The Research Wheel: How you can help move research forward

Tamara Al-Hakim, Foundation for Sarcoidosis Research

Auditorium B Overwhelmed: How to cope with the emotional fallout of sarcoidosis Jessica Voigts, LCSW, OSW-C, UIC Health

Auditorium C Nutrition

Tooba Durrani, ND, LAc, Herbalist

10:00-10:50 AM Auditorium A COVID-19 Survey Results & Update

Robert Baughman, MD, University of Cincinnati

11:00 AM – 11:30 PM BREAK Meet FSR's first ever Chief Executive Officer, Mary McGowan in the LOUNGE!

11:30-12:20 PM Auditorium A Navigating Insurance

Pat Jolley, RN, Patient Advocate Foundation

Auditorium B Complimentary and alternative medicine therapies for sarcoidosis symptoms Jinny Tavee, MD, National Jewish Health

Auditorium C Cardiac Sarcoidosis: Focus on Chronic Disease David Birnie, MD, University of Ottawa Heart Institute

12:20-1:00 PM BREAK Check out the Exhibitor Hall to find our Wellness Booth, WASOG recognized Clinics, Merch, and Partners! Meet our Sarcoidosis Warriors in the LOUNGE!

1:00-1:50 PM Auditorium A “You Don’t Look Sick”: How to manage relationships with family and friends

Sandra Manley-Eichler, LCSW

Auditorium B Disability and ADA

Pat Jolley, RN, Patient Advocate Foundation

2:00-2:50 PM Auditorium A Pulmonary Sarcoidosis: Focus on Chronic Disease Divya Patel, DO, University of Florida Health

Auditorium B Sarcoidosis 101 Nadera J. Sweiss, MD, FACR, UIC Health -- Bernie Mac Sarcoidosis Translational Advanced Research Center (STAR)

Auditorium C Understanding how to care for your emotional health

Jessica Voigts, LCSW, OSW-C, UIC Health

3:00-4:00 PM BREAK Check out the Exhibitor Hall to find our Wellness Booth, WASOG recognized Clinics, Merch, and Partners! Meet our Sarcoidosis Warriors in the LOUNGE!

4:00-4:50 PM Auditorium A Neuro Sarcoidosis: Focus on Chronic Disease

Barney J. Stern, MD, Johns Hopkins University

Auditorium B Monitoring: What you need to know

Rahat Hussain, MD, University of Texas Health

Auditorium C Accessing off-label drugs Pat Jolley, RN, Patient Advocate Foundation

5:00-5:15 PM Auditorium A Closing

Louise Perkins, FSR Chair, Board of Directors

EXHIBIT HALL

All Day FSR Wellness

QiGong with Tooba Durrani, ND, LAc, Herbalist

Mindfulness and Meditation with Erika Ruber, LCSW

11:00-11:30 AM Lounge

Meet FSR’s first ever Chief Executive Officer, Mary McGowan

12:30 AM – 1:00 PM Lounge Meet Jim Kuhn

12:30-1:00 PM Lounge Meet Jessica Reid

3:00-3:30 PM Lounge Meet Sabrina Sonnier

3:30-4:00 PM Lounge Meet John Carlin

All Day

Lounge & Boehringer Ingelhiem Booth

Boehringer Ingelheim Patient Mentor Video

Boehringer Ingelheim Interstitial Lung Disease Video

All Day Lounge & Xentria Booth

The Patient Voice in Rare Drug Development