If you are in the rare disease and/or healthcare space in any capacity and would like to share your perspective on this concept, please get in touch! This is a team effort and we really value your insights.
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.
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.
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.
We're very interested on 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.
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!
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.