Welcome to ANE International

Bienvenue chez ANE International

Bienvenidos a ANE Internacional

Bine ati venit la ANE International!

Welkom bij ANE internationaal

Welkom by ANE Internasionaall

Nau mai haere ki tenei Roopu mo te Ao ko te ANE

Selamat bergabung di ANE International

ANE international mein aapka swagat hai

Tervetuloa kansainväliseen ANE-ryhmään!

Willkommen bei ANE international

ANE International is a non profit organization focused on raising awareness of Acute Necrotizing Encephalopathy. ANE International is an initiative that began in 2016 by parents of children affected by ANE. Our goal has foremost been to support and inform all families affected by ANE regardless of age and/or nationality. The hardest part of dealing with a rare disease is the sense of isolation that families feel, we want to break these barriers and bring a community to them in those first days when their world is changing drastically.

ANE International wishes to support research in any way possible and to spread the existing knowledge of ANE among the general population & medical communities.

ANE is a devastating brain disease that occurs following viral infections. Influenza is the leading trigger, followed by HSV-6 and other viruses such as rhinovirus, coxsackie and enteroviruses, very rarely ANE may be caused by bacteria.

ANE is found worldwide, affecting previously healthy children. It usually occurs in early childhood although adolescent and adult cases have been reported.  ANE has two variations making this disease both non-genetic and genetic. Non-Genetic ANE typically only occurs once where the genetic variation can occur repeatedly.  Per Novo cases (new genetic mutation) are also seen with ANE.

The susceptibility to recurrent acute ANE is caused by a heterozygous pathogenic variant in RANBP2. The current research indicates a re-occurence of 50% after the first event and 25% after the second event.

 

 

Fate whispers to the Warrior  “You cannot withstand the storm”

and the Warrior whispers back ” I am the storm”

 

 

Is your family, a loved one or a friend affected by ANE? You can find an active and engaged community on Facebook by clicking below.

How to get Involved

 ANE is an extremely rare disease which is not typically listed in most National Rare Disease databases. Please assist us if your country has not yet listed ANE by sending a request to the organization. Or contact us with the organization’s details and we will request it for you. To help raise awareness seek out how you can be involved in Awareness Days for Brain Injury, Encephalitis and Rare Disease.