ICD-10 Codes

We’re excited to announce our meeting for the CDC to introduce ICD-10 (classification) codes for CPVT, ACM, and Brugada Syndrome in September 2025.  (LQTS families, we helped with the initiative many years ago for your ICD-10 code!) 

“ICD-10 code” might sound pretty dry – but having the proper code for your condition will make a huge impact on your care. Learn more below.

What is an ICD-10 code and why is it important?

ICD-10 codes are what your doctor puts in your medical chart as your specific diagnosis. They use this code to bill insurance and get the proper treatment for your condition covered. These codes are international, so they’re used around the globe.

For our families with ACM, BrS, and CPVT, the current lack of an ICD-10 code means that your care team currently uses an adjacent or “other” classification when charting about your condition.

Here are some concrete ways that having an ICD-10 code will help families:

• Having an ICD-10 code should help smooth the process of insurance approvals for needed treatments, like an at-home AED if your doctor recommends one.
• An ICD-10 code means that this condition shows up when doctors are looking for the right diagnosis. It also helps them use the standard-of-care treatments, and refer you to experts in your condition.
• It will also accelerate research by helping researchers understand how many people truly have these conditions. 

In other words – we’re proactively making sure that the way is cleared for the improved treatments our community deserves.

What’s next and how can I stay involved? 

You can read our press release here for more details about this meeting, including the international experts we’re bringing to the CDC to talk about these conditions and the need for proper coding.

Follow us on our social media channels and keep an eye out for future emails to learn more. We should hear back from the CDC in early 2026 with their decision of whether these new codes were accepted.