About ANE International
ANE International found its beginnings in early 2016 when a newly diagnosed Australian family reached out to a family in canada. This Canadian 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. Today we have over 50 families. Members are worldwide including USA, South Africa, New Zealand, United Kingdom, Indonesia, The Netherlands, Austria, Finland, Malaysia, Italy 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 this website in the hope of bringing even greater awareness.
To empower ANE families through education, shared experience & support. Creating awareness on all aspects of ANE among the general public, medical & research communities.
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.
About Our Logo
Our logo originally started with a bare tree inside of a brain. 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. This tree after the storm resembles ANE warriors in their battle(s). 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. We needed a truer representation of ANE and our artist, Mara Pianosi, created this beautiful logo as a representation of beauty, fragility and determination such as all ANE afflicted families show repeatedly over their journey. The butterfly represents the symmetrical brain lesions that are a distinct feature of ANE and the beauty that is found in change.