About ANE International

ANE International found its beginnings in early 2016 when a newly diagnosed Australian family reached out to a Canadian family. This family had been dealing with ANE for 7 years with no contact with any other ANE family. From this humble beginning a closed Facebook group was formed on 1st April 2016. Slowly other members joined, and one year later 26 affected families were enjoying the support and shared information within this group. Members are worldwide including USA, South Africa, New Zealand, United Kingdom, Indonesia, The Netherlands, Austria, Finland, Malaysia and India. 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 its website in the hope of bringing even greater awareness.

Our Mission

To empower ANE families through education, shared experience & support. Creating awareness on all aspects of ANE among the general public, medical & research communities.

Our Vision

To make Acute Necrotizing Encephalopathy (ANE, ANEC, IIAE3, ADANE or ANE1) a highly recognised disease. For it to be as rare as it possibly can be; given its eradication is unlikely. That those affected and their families have access to social & moral support and be provided with informal education through shared family experience. To raise awareness in the medical community about this little known & rare disease and to educate the public about the importance of vaccinations through patient advocacy.

The Brain Tree Logo

A storm can leave trees looking like there will be no tomorrow. Major limbs may be broken or damaged, foliage can be shredded or stripped, or the bark may be torn or gouged. But with time and nourishment regrowth occurs, sometimes making the tree different but stronger than ever. This tree after the storm resembles ANE warriors and their battle. Trees have many branches just like ANE has many variances and a tree has roots that are often hidden. The true root cause of ANE still remains hidden. Trees have also long been connected with families, the many branches of a family tree with all the inherited genes this encompasses and the different paths each of us have in our lives.