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What We Do

We are currently working on several specific projects and hope to have a roundtable soon to keep the community updated. Stay tuned!

  • We have submitted a proposal to change how "Uncertain Diagnoses" are coded in the United States of America to include the use of R69. If you are interested in showing your support, please see here.

  • Our next highest priority is to see the development of criteria for when R69 ("illness unspecified") can be used to maximize global benefit. We anticipate this being a highly collaborative effort and are looking for partners to help organize the merging of perspectives from medical experts and those with lived experience on the rare disease diagnostic odyssey. Get in touch:


R69 Initiative 2023

The idea, the vision, and a hopeful future. This 5 minute overview walks through the concept of the initiative and alludes to several ongoing efforts globally that stand to change the world for the better!

October 2022 Presentation

Presented to a Serbian audience for their annual rare disease event, this is an earlier presentation of the idea and shares some insight into how the R69 code is currently being used (not how we envision it but we have big hopes for change!).

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