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The unique nature of zebra stripes holds a special meaning in the rare disease community. There is a saying often used during the training of medical professionals that when you hear hoofbeats, you should think of horses. Meaning that more common causes for ailments are statistically more likely so, as a provider, one should think with a focus on the more common diseases. Frustratingly to hundreds of millions of people, sometimes the source of those "hoofbeats" is a rare disease - a zebra!
This lovely image by Beverly Joubert was taken from a helicopter over the Makgadikgadi Salt Pans in Botswana. With the sun positioned just right in the sky, these shadows are 100% natural, truly looking like horses when the origin of the shadows are, in fact zebras. Taken using a Sony camera with a 70-400mm lens, only edited minimally to enhance what was already there, and the result is this striking image that so perfectly conveys the plight of the rare disease community being mistaken at first glance (and second and third!) for horses.
The R69 Initiative exists to address this plight.
Goal
To reduce the duration of the diagnostic odyssey for persons living with a rare disease by promoting the concept that specific medical code(s) (e.g. R69 ICD-10 code) be used by medical professionals to denote when someone is undiagnosed.
Benefit - w/policy adoption
Flagging a person as "undiagnosed" 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.
Benefit - w/tool development
As tools are developed and improved to proactively analyze (EHR's) to find rare disease cases, intentionally flagging undiagnosed cases in a consistent manner should help connect persons on their diagnostic odyssey with additional resources.
We will hold roundtables throughout the year:
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Anticipated Questions
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.
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