One of the greatest challenges faced by those living with an undiagnosed disease is the lack of information and communication. When a patient experiences symptoms that aren’t easily classifiable or seem uncommon, they can fall through the cracks of modern medicine—leaving them feeling isolated while the true cause of their disease goes unexamined.
Here, you can learn more about some of the genes we are studying.
To help find patients with the same or similar condition, we are creating public web pages about participants in our study. Our goal is that healthcare providers, researchers, and families who know similar patients will find these pages. Connecting these patients with ours will ideally help us identify shared symptoms and diagnoses.