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These are some of the most commonly asked questions that we receive.


If you have a question that is not answered here, please do not hesitate to reach out. 

I am a person on my diagnostic odyssey. Can I use this?

We hope so! We envision this as an accessible advocacy tool for your journey. You can share this website with individuals who may want an explanation but we want you to be able to ask for the R69 code to be placed in your file to denote that you do not yet have a satisfactory diagnosis or believe yourself to be toward the beginning of a diagnostic odyssey. If you have used the R69 code for this purpose, please share your experience to inform this movement.


How can we get something like Zoja's Law implemented in my country?

Great question! We are very interested in amplifying the message of Zoja's Law around the globe and will be forming public policy working groups to strategize on this in the coming months. Please reach out and share your interest.


Are there examples of tools that proactively find rare disease cases?

Yes. There are a few that inspire tremendous hope and we will be updating the website shortly with examples. In the meantime please feel free to get in contact and we will share our list.


Does it have to be R69?

We're very interested in expert opinion on this. Right now we are promoting the use of R69 as the code to denote "undiagnosed" and R69 sounds a bit catchier than MG68 (a similar ICD-11 code) but most importantly, because of its widespread global usage.


I represent an organization with a shared interest. Are you looking for sponsors?

Yes. Yes, we are! This initiative and the person-power behind it is currently being sponsored by KAL Research Initiatives LLC and we welcome any and all community partners, individuals, and sponsors to help change the diagnostic odyssey for persons living with a rare disease. Please fill out this interest form and we'll be in touch!


What will this initiative be doing to achieve this goal?

The first few steps will involve global stakeholder listening sessions, developing educational and informational materials to increase awareness of this concept, identifying events with audiences who can further this initiative, and sharing the content we develop at the most appropriate and potentially impactful venues. 

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