top of page

Welcome to Our Cause

©BeverlyJoubert_ShadowMarch_r69initiative.jpg

Our Mission

To positively transform the diagnostic journey and reduce health inequity by advocating for the ICD-10 code R69 to be used to denote when someone is experiencing diagnostic uncertainty. 

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

R69 Initiative 

Action Plan

The R69 Initiative "Evolving Plan" is meant to serve as a shared to-do list for the community at-large interested in moving this mission forward. To add something as a line item, put the to-do item in the subject line and any will-be-public-facing details in the body of an email addressed to inbox+R69initiative@appfluence.com

When you click on each item, a window will open to the right that contains any additional details and links. If you or your organization are the champion of that to-do item, you may be able to update your progress such that anyone in the community can understand our collective status at any given moment.

Roundtables

The purpose of these meetings is to ignite passion, identify individual and organizational alignments and make decisions together. Everyone who attends these meetings will have the opportunity to steer the focus of the conversation through the live polls and the chat. 

Roles

  • Every meeting will have a person who presents 8-10 topics that the rest of the audience will prioritize. The first portion of the conversation will include introductions and role determinations.

  • Every meeting will involve breakout sessions to select 5 decision-makers, a decision detector, and a task collector. ​​

    • Every meeting will have a "Decision Detector" to draw explicit attention to instances in which a decision is warranted.

    • Every meeting will have a "Task Collector" who will convert comments such as "we should probably try to..." into to-do items they will place on the Living Community Priority Matrix.

 

Even if no major decisions surface, decisions can be taken regarding where in the priority matrix (above section) newly generated tasks should be placed, until these are re-decided at the next meeting.

Decisions, including when to deviate from this vision, can follow sociocracy.

  • A full "round" involves each of the 5 decision makers speaking uninterrupted, in turn, (we can do surname alphabetically) to share their perspective before taking the decision.

  • Polling of the group at large on specifics stemming from the conversation will be supported by the hosts.

  • The goal is to achieve full consent of the 5 decision-makers who will be informed by polls from the group at-large. 

  • Objections should be raised when the path being proposed runs contrary to the mission, not merely when there are slight preferences (these can be voiced in the chat feature, live).

Housekeeping Notes:

  • Individuals wishing to maintain anonymity are welcome to do so by renaming themselves "anonymous" and staying off camera.

  • Please bear in mind some individuals joining from all over the world may simply be off-camera to conserve bandwidth.

Subscribe

Thursday, May 21st 1500UTC - Please Register Here

1500UTC_10amCST.png

Wednesday, June 17th 1400UTC - Please Register Here

1400UTC_9am.png

Friday, July 31st 1300UTC - Please Register Here

1300UTC_8amCST.png

Monday, Aug 10th 0200UTC - Please Register Here

0200UTC_9pmCST.png

Tuesday, Sept 22 1900UTC - Please Register Here

1900UTC_2pmCST.png

October - coming soon

November - coming soon

December - coming soon

These maps look a little different on purpose. Most maps you see stretch land masses nearer to the poles distorting the actual relative sizes of countries. While there are gaps in-between some countries on this map that do not exist in reality, each country-to-country size ratio is accurate thanks to the efforts of @neilrkaye - used with permission.

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

Thanks for joining our cause!

Imagine This

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

THANK YOU TO OUR INERTIAL PARTNERS

image.png
image_edited.png
logo.png
image_edited.png

©2026 by KAL Research Initiatives LLC. Proudly created with Wix.com

bottom of page