Principles

What are the directory's principles?

The directory is based on public information (linkable profiles or pages about the individuals)
The directory is unaffiliated (not an organization nor associated to any organization)
The directory aims to be replicable (related directories for other notable Long X patient populations are encouraged)
Maintenance of the directory is volunteer-driven (additional volunteers are welcomed)
Maintenance of the directory is open (the public can submit additions & updates which are incorporated upon human-verification)

How does the directory currently operate?

Practical decisions are made at any given time to implement the principles above, including:

A STEM background or track record is defined here as:
- having credentials (at any level) typically conferred by a college or university's divisions of natural sciences or engineering,
- (and/or) having a history of peer-reviewed publications in these academic disciplines (can include patients-turned-researchers).
As clinicians are typically trained in health sciences divisions, they are currently not included by default. Clinician-scientists however are included, e.g., when the individual has a track record of scientific publications (note: a separate related directory dedicated to Long X clinicians is especially encouraged).
Additional Long X categories may be added once there is a critical mass of at least 5 individuals identified in that category with STEM backgrounds.
Each directory element (table cell) should contain a link identifying the information source.
Each directory entry (table row) can contain multiple links if the human volunteer making the entry determines they pertain to the same individual with a high degree of confidence.
Each directory entry (table row) should identify its last updated date, at which timepoint all links in the entry should be verified.
The directory maintainers are human, which implies occasional errors may be made. Corrections are welcomed as submitted additions & updates.
Directory expenses are minimal and covered by the volunteers' personal funds.