Announcing ICD-10 Codes for Lafora Disease

We are thrilled to announce that newly designated, unique ICD-10 Diagnostic Codes for Lafora Disease will be effective on October 1, 2023.

Lafora progressive myoclonus epilepsy, or Lafora Disease, an ultra-rare neurodegenerative disorder affecting children, has been assigned code G40.C, falling under the G category of diseases representing nervous system disorders. 

This development marks a crucial milestone for the Lafora Disease community since we had no specific code and, therefore, no way to accurately track the disease across healthcare systems. Until now, Lafora was grouped with other epilepsy diseases that are not as severe or complex. This made it difficult for doctors, insurance companies, and policymakers to understand the urgency and unique needs of Lafora patients.

 

What are ICD-10 codes?

ICD-10 codes…

• improve streamlining insurance claims processing,
• provide important data to healthcare professionals
• make it easier for researchers to conduct epidemiologic research and retrospective studies,
• determine true prevalence rates
• recruit patients for clinical trials,
• track outcomes of clinical interventions
• develop protocols for standard of care.

Chelsea’s Hope is immensely grateful to have a unique code for Lafora Disease.

We urge everyone to use the newly designated G40.C ICD-10 code when diagnosing and documenting Lafora Disease cases. Our new code will help us build a more comprehensive understanding of the prevalence and impact of Lafora Disease, ultimately accelerating research efforts toward a cure. Please help us share this news!

Find more information on the codes, as well as FAQs, on our webpage HERE.

You can also read and share our press release.