Navigating the Diagnostic Odyssey - 10:45 - 11:45 am at the TWC

Navigating the Diagnostic Odyssey  

TWC Breakout Session
10:45 - 11:45 am
Room a1

Session Discussion

Rare and undiagnosed diseases affect over 30 million people in 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 experience.

SPECIAL NOTICE!
a CONFERENCE WITHIN A CONFERENCE
aDDITIONAL dISCUSSION FROM 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

Dr. Chandra is a Neurogeneticist specializing in rare and ultra-rare neurological disorders. He is an Assistant Professor at the University of Iowa. He is the director of the Undiagnosed Diseases Program housed in the Division of Medical Genetics and Genomics at the Stead Family Children's Hospital. He is also a member of the N=1 collaborative working group focusing on therapeutics development for ultrarare diseases. His laboratory focuses on disease modeling for rare diseases using stem cells and organoid systems.

Dr. Tung is an Assistant Professor within the Division of Medical Genetics and Genomics at the University of Iowa. She is an adult hematologist with advanced training in medical genetics and currently specializes in the genetics of rare hematological disorder. Dr Tung’s research focuses on germline genetic predisposition to hematological cancers and inherited bone marrow failure syndromes.