The Kith Collective

Loved working with EveryLife Foundation for Rare Diseases and such an inspiring group of advocacy leaders and subject matter experts to develop these tools and share case studies like this one from the Dravet Syndrome Foundation!

The youngest of Mary Anne's three children, Elliot, has Dravet syndrome, a rare catastrophic form of epilepsy that begins in the first year of life. One of the challenges she recognized was the manner in which Dravet syndrome was coded in health information systems. "This made it more difficult to secure coverage for indicated medicines and medical testing to address all healthcare needs of a person with Dravet syndrome”, says Mary Anne.

The EveryLife Foundation in collaboration with dozens of rare disease patient advocacy community partners has created an ICD Code Roadmap. 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.

To read Mary Anne's full story and share the ICD Code Roadmap and accompanying tools, visit https://everylifefoundation.org/icd-code-roadmap/

The ICD Code Roadmap was made possible with the support of The Kith Collective and through unrestricted educational grants provided to the EveryLife Foundation by Alexion Pharmaceuticals and Sarepta Therapeutics