Diagnostic Odyssey
The journey it takes for a patient to be diagnosed, known as a Diagnostic Odyssey, has proven to take an extended period of time and resources for members of the rare disease community. On average, it takes over 6 years and 17 medical appointments to receive a Rare Disease diagnosis after the first appearance of symptoms1. In this section, we hope to provide information and resources regarding the Diagnostic Process.
Resources
A study highlighting the impact of delayed diagnoses in the Rare Disease Community
A study highlighting the true in-depth impact of Rare Disease on U.S. Economics including its impact on all U.S. Citizens including non-rare communities
An informative guide for all topics related to understanding ICD Codes and their importance in diagnosis and tracking health outcomes
An in-depth guide for all areas related to seeking a Genetic Diagnosis including resources on advocating for Genetic Testing
A program existing with the purpose of connecting individuals and families undergoing a potential rare or ultra-rare diagnostic odyssey with resources to help them with their diagnostic journey
A guide for parents/caregivers focused on increasing knowledge surrounding the journey to being diagnosed with a Rare Disease