Navigating the Diagnostic Odyssey: A TWC Breakout Session

Join Bharat Chandra, Assistant Professor and Director of the Undiagnosed Diseases Program at the University of Iowa, and Moon Ley Tung, Assistant Professor in the Stead Family Department of Pediatrics, as they explore undiagnosed and rare diseases.

Following their breakout session, they'll lead a one-on-one discussion designed specifically for families to delve deeper into the topic.

Rare and undiagnosed diseases affect over 30 million people in the United States and over 450 million people globally. Unfortunately, most of these diseases are associated with several years of diagnostic odyssey, resulting in a huge psychosocial and financial burden on the patients and their families. In this session, the speakers will cover a broad overview of undiagnosed diseases and rare diseases, which will set the stage for discussion on this topic and for families to share their experiences. 

SPECIAL NOTE — A CONFERENCE WITHIN A CONFERENCE
1 - 3 PM IN THE KEYNOTE ROOM (UPPER LEVEL WEST)

Join us for an open forum for patients and families to discuss their challenges with undiagnosed and rare diseases. Participants will share their personal experiences with the diagnostic odyssey.

When: 
At the Together We Can Conference, May 3rd, 2025

Breakout Session: 
Session One from 10:45 AM - 11:45 AM

Track: 
Health & Wellbeing

Room: C

REGISTER FOR THE CONFERENCE

Participants will:

1. Gain a comprehensive overview of the prevalence, impact, and challenges associated with rare and undiagnosed diseases.
2. Discuss the significant psychosocial and financial burdens that arise from living with undiagnosed diseases.
3. Create a safe space for families to share their personal experiences with rare diseases and find support for their next steps. 

Speaker Bio: 

Bharatendu “Bharat” Chandra MD, FACMG	Moon Ley MD, FACMG

Dr. Chandra is an Assistant Professor and director of the Undiagnosed Diseases Program at the University of Iowa. He is a neurogeneticist and rare diseases researcher. Dr. Chandra will share his experience from the Iowa Undiagnosed Diseases Program highlighting the clinical landscape, challenges, and emerging approaches for individuals with undiagnosed rare diseases.

Dr. Tung is an Assistant Professor in the Stead Family Department of Pediatrics at the University of Iowa. She is an adult hematologist and clinical geneticist with a research interest in rare hematological disorders. Dr. Tung will share her experience working with patients with rare genetic disorders and the challenges that these patients face after being diagnosed with a rare disease.