ANE International found its beginnings in early 2016 when a newly diagnosed Australian family connected with a family in Canada. Neither family could find support specific to ANE worldwide. From this humble beginning a closed Facebook group was formed on 1st April 2016. Slowly other members joined, and a community was formed, enjoying support and shared information. Today we have many families, and continue to grow. Members are from The Americas, Europe, Africa, Asia and Oceania. The creation of an open Facebook Page in 2017, ANE International, opened up a wider base to share medical information, research and relevant content. In 2017 ANE International launched this website in the hope of bringing even greater awareness.