AGS Family and Physician Reference

A Guide for AGS Families and Their Teams to Better Understand and Improve Care for AGS

Disclaimer: This document is a draft and provided in advance of formal and thorough review to address the immediate and pressing need for information and guidance.

Herein, we provide an in-depth look at Aicardi-Goutieres Syndrome (AGS) for families and their care teams to better understand the complexity and heterogeneity of AGS. Affected individuals and their caregivers may find this content dense, especially if they lack medical and/or scientific training; but we endeavor to make the booklet as accessible as possible. Families may wish to begin by reviewing the AGSAA’s resources developed primarily for them.