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Our ANE Stories From Around The World

We are so grateful to the ANE families that have shared their stories. It takes a great deal of courage to revisit, what is, a very traumatic experience. We hope each of their journey’s will help and inspire others.

Should you wish to connect with other families in your home country please contact us. Some countries will not have stories submitted, this doesn’t mean we do not have members there.

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 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.