Decoding ICD Codes

Access Working Group

The ICD Code 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.

“Upon learning that new codes for Dravet syndrome were going to become effective, we immediately went to work to spur awareness and adoption of the new codes. They won’t benefit anyone if healthcare professionals didn’t know they exist.” – Mary Anne Meskis, mother of a son with Dravet Syndrome

“The code specific to Castleman disease wouldn’t exist if we hadn’t lobbied for it. Someone had to turn hope into action to make this a reality. If you don’t do it, oftentimes no one else will.” – David Fajgenbaum, M.D.