International Rare Disease Day

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Acute Necrotizing Encephalopathy (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.

Visit ANE International to find out more about Acute Necrotitizing Encephalopathy.

 

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