The EveryLife Foundation for Rare Diseases in collaboration with dozens of rare disease patient advocacy community partners has created an ICD Code Roadmap resource guide. The Roadmap is a first-of-its-kind resource designed to help patient advocacy leaders and their partners understand, evaluate their role, and navigate the process of refining the diagnostic coding system in the U.S.
The Roadmap is available on the Foundation’s new ICD Code Roadmap web page along with other resources, including a Readiness Assessment Survey to help patient advocacy leaders assess their readiness to engage in the ICD code revision process, a brief video for use by partners seeking to understand how ICD codes are utilized and can impact the rare disease journey, and a Partner Toolkit for patient advocacy organizations to help others better understand the process.
ICD stands for “International Statistical Classification of Diseases and Related Health Problems.” It is a standard classification system used around the world throughout the healthcare system and by government agencies and researchers to track and report diseases, disorders, injuries, and other health conditions. Many of the more than 7,000 known rare diseases lack ICD Codes or proper ICD classification, adding to the complexities experienced by rare disease community members and healthcare systems.
Until now, no formal guidance or resources existed. Over the last 18 months, the Foundation has worked to develop this resource with dozens of rare disease patient advocacy community partners, including several who have led successful initiatives to add new ICD codes or revise existing codes.
To view and share the ICD Code Roadmap and accompanying tools, visit ICDCodeRoadmap.org.
The ICD Code Roadmap was made possible with the support of Kith Collective and through unrestricted educational grants provided to the EveryLife Foundation by Alexion and Sarepta Therapeutics.
