Getting an ICD-9 code added for your condition
Why the organization is requesting a code--usually because there isn't a specific code and this makes it very difficult for researchers studying the disorder/disease to accurately track or identify patients for epidemiology studies, development of new treatments, long term health care costs, NIH studies etc (NEVER mention insurance reimbursement--that will kill a request quickly!)
Current codes that are used to identify the disorder--if the group or organization doesn't know, then send NCHS an email asking for the best possible code(s)
A brief overview of the disorder and the patient populations it may affect--in this part the group should provide any research data that researchers may have and can also address the fact that the LACK of specific codes makes it very difficult for the organization to develop data--incidence or prevalance.
New ICD-9-CM diagnosis code the org would like NCHS to use to identify the disorder--NCHS is looking for the best fit, a code that the ICD-9 coders will find logical and easy to use.
It is not a hard process but the biggest hurdle is to get NCHS to agree that the request has merit. One of the strongest arguments for merit is that WHO or the ICD-10 already has a listing for your group's disorder--NCHS must add a new ICD-9 diagnosis code for any disorder recognized WHO.
A list of ICD-9 codes can be found here.