top of page

Welcome to Our Cause


Our Mission

To positively transform the Rare Disease diagnostic journey and reduce health inequity by strategically promoting the ICD-10 code R69 be used to denote when someone is not yet diagnosed, at the beginning of their "diagnostic odyssey." 

To learn more about this stunning image by the amazingly talented Beverly Joubert and how it portrays the plight of those not yet diagnosed with a Rare Disease, click the information icon


Of utilizing the ICD-10 code R-69

Policy Adoption

Flagging a person as "not yet diagnosed" or some variation thereof, can impact what resources they receive to move further toward diagnosis. For example, in Serbia, Zoja's law requires doctors to send samples out of the country when someone is undiagnosed more than 6 months.

Tool Development

As tools are developed and improved to proactively analyze (EHR's) to find rare disease cases, intentionally flagging cases where patients are still seeking meaningful diagnoses, should help connect persons on their early stages of their diagnostic odyssey connect with and/or gain access to additional resources.

Imagine This

Diagnostic Odyssey graphic (12 x 8 in) (3).png

R69 Initiative 

Action Plan

Below are key areas within our mission and to the right is a plan that is updated live so you can follow our activities. The four quadrants help us visualize which action items are urgent, important, and sometimes both. You can also toggle at the upper right to see different visualization items.




We hold roundtables throughout the year!

Click below to register

Subscribe to our emailing list to hear about our roundtables and the formation of working groups.

Thanks for joining our cause!


bottom of page