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ANEmone: The 1 st Acute Necrotizing Encephalopathy Science & Family conference raises hope for an ultra-rare disease
Article de revue   Open Access   Avec comité de lecture

ANEmone: The 1 st Acute Necrotizing Encephalopathy Science & Family conference raises hope for an ultra-rare disease

Maëva Leplat, Sophie Desgraupes, Guillaume Beucher, Adrien Decorsière, Anouk Perrin, Suzon Perrin et Nathalie J Arhel
Virologie
04/2025

Résumé

In April 2025, the first-ever science-family symposium on Familial Acute Necrotizing Encephalopathy (ANE1) was hosted in Montpellier with funding from the ANRS-MIE (Emerging Infectious Diseases), the Institut de Recherche en Infectiologie (IRIM), the Université de Montpellier, and the Société française de virologie. The aim of the two-day meeting, co-organised by Nathalie Arhel (IRIM, Université de Montpellier, CNRS) and Kim Smith (ANE-International), was to connect families, doctors and scientists, to raise awareness and accelerate research.

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