Scleroderma Patient
Education Conference
October 17, 2026
Chicago, IL
Get The Support You Deserve
Topics and Speakers
Managing Fatigue with Scleroderma
Carrie Richardson, MD
Co-Director, Northwestern Scleroderma Program
Fatigue is one of the most common, debilitating, and misunderstood symptoms that people with scleroderma face. In this session, we’ll talk about the causes of fatigue in scleroderma, and we’ll also talk about strategies to help with managing fatigue.
Dr. Richardson has worked with the Northwestern Scleroderma Program since 2012 and has published several papers on scleroderma, calcinosis, myositis, and interstitial lung disease. She completed her residency at Northwestern in 2015 and her fellowship at Johns Hopkins in 2018, and she returned to Northwestern in early 2022 as Co-Director of the Northwestern Scleroderma Program.
Taking Control: Techniques for Coping with Scleroderma
Judith Wilen, PhD
Northwestern Scleroderma Program
A scleroderma diagnosis can bring feelings of sadness, anxiety, fear, grief, isolation, or depression—but you don't have to face them alone. Led by a leading clinical psychologist with expertise in scleroderma, this interactive workshop will provide practical strategies for strengthening your mental and emotional well-being. Through guided discussion and shared experiences, you'll connect with others who truly understand the challenges you're facing, discover healthy coping techniques, and leave with renewed hope and tools to help you move forward with confidence.
This workshop is led by Dr. Judy Wilen, Clinical Psychologist and consultant to the Northwestern Scleroderma Program, along with Tiffany Phanhdone MD from Rush University Medical Center.
Tiffany Phanhdone, MD, was diagnosed with scleroderma in 2007 and has been an active member of the Scleroderma Foundation of Greater Chicago since 2015. Tiffany has worked with the Northwestern Scleroderma Program, University of Michigan Scleroderma Program, as well as the Steffens Scleroderma and Degos Disease Foundation as a researcher and patient advocate. Tiffany frequently collaborates with Dr. Judy Wilen in ensuring mental health management with scleroderma patients. She currently works as a research compliance specialist at Rush University System for Health.
Scleroderma & Lung Health: A Panel Discussion
Presenter TBD
This panel presentation will cover the many implications and intersections of scleroderma and lung health. Scleroderma experts will discuss various lung-related complications of scleroderma such as ILD (Interstitial Lung Disease) and pulmonary hypertension alongside best-practices for maintaining your lung health. Be prepared to leave the presentation with knowledge of the latest in lung treatment, and the power to take charge of your lung health.
Using Your Voice: An Interactive Self-Advocacy Workshop
Karen Brown, MA
Award-Winning Author
In this interactive session, you'll discover the many ways you're already using your voice, build confidence to navigate healthcare and everyday challenges, and leave with practical tools to advocate for yourself and others. Through conversation, reflection, and shared experiences, you'll uncover your strengths, learn from fellow participants, and identify one meaningful next step in your own self-advocacy journey.
Karen Brown's relentless self-advocacy changed the course of her life, and she now dedicates herself to helping rare disease patients and caregivers advocate for themselves through her nonprofit, Rare Disease Advocacy, where she focuses on self-advocacy education. With 39+ years as a business executive and professor and 20+ years as a board director, she brings a compassionate approach to leadership and advocacy at the national and state levels.
![professional headshot 2022 Liu[76].jpg](https://static.wixstatic.com/media/4cf6ab_0fad790740114406b09f5e3cbf8decd0~mv2.jpg/v1/fill/w_270,h_266,al_c,q_80,usm_0.66_1.00_0.01,enc_avif,quality_auto/professional%20headshot%202022%20Liu%5B76%5D.jpg)
Scleroderma, Nutrition, and the GI Tract
Beth Doerfler, MS, RDN
Joy Liu, MD
Take charge of your health! Scleroderma can present various issues that affect the GI tract. Learn invaluable insights into the role of nutrition in managing scleroderma, offering a unique opportunity to optimize your dietary choices and improve scleroderma symptoms.
Dr. Doerfler is a registered dietitian whose clinical practice and research focuses on providing wellness-based medical nutrition therapy for digestive disorders and allergic bowel diseases. She currently practices in the Division of Gastroenterology and Hepatology at Northwestern Medicine in Chicago, IL. She is the first dietitian to be fully integrated into a gastroenterology division for both research and patient care.
Dr. Liu is an Instructor of Medicine in the Division of Gastroenterology & Hepatology at Northwestern University. She specializes in neurogastroenterology and motility, specifically, chronic nausea and vomiting including gastroparesis. She is also working with the Lurie Children’s Hospital of Chicago to transition people with motility disorders and DGBI to adult care. Along with Dr. Darren Brenner, she sees people with scleroderma who have involvement anywhere in the GI tract. She completed her medical degree at the Warren Alpert Medical School at Brown University, internal medicine residency at Beth Israel Deaconess Medical Center, and gastroenterology and hepatology fellowship at Northwestern University, where she was Chief Fellow. In addition, as the inaugural Irene D. Pritzker Neurogastroenterology Fellow, she completed a certificate in health services and outcomes research through Northwestern University.