The International ANE Medical & Scientific Network

The following clinicians and researchers collaborate internationally to improve the understanding, diagnosis and treatment of Acute Necrotizing Encephalopathy (ANE), including RANBP2-associated ANE.

About this network

These experts form part of a growing international group focused on improving the understanding, diagnosis and treatment of Acute Necrotizing Encephalopathy (ANE). Together, they combine expertise in paediatric neurology, immunology, intensive care, virology, genetics and molecular biology to advance research and improve outcomes for children and adults affected by ANE worldwide.

Clinicians

Physicians who diagnose and treat children with ANE, and help analyse treatment outcomes.

Dr. Dewi Bakker

Dr. Dewi Bakker

Paediatric Neurologist

Amsterdam UMC · Netherlands

Emergency protocol contributor

One of the few clinicians worldwide focused on ANE, with a long-standing interest in inflammatory disorders of the brain. He helped identify a regional genetic cluster of the disease.

Prof. Ming Lim

Prof. Ming Lim, MD, PhD

Consultant Paediatric Neurologist

Evelina London Children's Hospital, Guy's & St Thomas' NHS Foundation Trust · United Kingdom

Emergency protocol contributor

International expert in neuroinflammation with extensive experience in the clinical management and research of ANE and other infection-triggered encephalopathy syndromes.

Prof. Taco Kuijpers

Prof. Taco Kuijpers, MD, PhD

Professor of Paediatric Immunology; Consultant, Infectious Disease & Clinical Immunology

Emma Children's Hospital, Amsterdam UMC · Netherlands

Emergency protocol contributor

International authority on paediatric immunology and immune dysregulation, and a Dutch clinical expert involved in ANE research and patient care.

Prof. E. Ann Yeh

Prof. E. Ann Yeh, MA, MD, FRCPC, Dip ABPN

Professor, Faculty of Medicine, University of Toronto

The Hospital for Sick Children (SickKids) · Canada

Emergency protocol contributor

One of the world's leading clinician-scientists in paediatric neuroinflammatory diseases, including ANE. She directs the Pediatric MS and Neuroinflammatory Disorders Program and holds the Garry Hurvitz Chair in Neurology at SickKids, where she is also a Senior Scientist, combining clinical care with international research.

Dr. Mia Westerholm-Ormio

Dr. Mia Westerholm-Ormio, MD, PhD

Consultant Paediatric Neurologist

Helsinki University Hospital · Finland

Emergency protocol contributor

Paediatric neurologist at Helsinki University Hospital, with expertise in paediatric neuroinflammatory diseases and neuro-oncology.

Prof. Kumaran Deiva

Prof. Kumaran Deiva, MD, PhD

Professor of Paediatric Neurology

Bicêtre & Trousseau Hospitals (AP-HP), Paris-Saclay University · France

Coordinator of the French National Reference Centre for Rare Neuroimmune Disorders (MIRCEM) and Neuroimmune Lead for the European Reference Network ERN-RITA. International expert in paediatric neuroimmune disorders, leading clinical and translational research in ANE and other rare neuroimmune diseases.

Dr. Wiem Barbaria

Dr. Wiem Barbaria

Paediatrician & Associate Professor

Habib Bougatfa University Hospital, Bizerte · Tunisia

Paediatrician and associate professor at the Faculty of Medicine of Tunis, specialising in paediatric care and neonatology, and dedicated to advancing emergency protocols and clinical management for acute paediatric disorders.

Dr. Federica Barzaghi

Dr. Federica Barzaghi, MD, PhD

Paediatrician, Immunohaematology Unit

IRCCS San Raffaele Hospital, Milan · Italy

Emergency protocol contributor

Physician-scientist focusing on the diagnosis, management and development of advanced therapies for inborn errors of immunity, particularly immune dysregulation disorders. Involved in the care of patients with ANE and contributing to international guidelines from the immunological perspective.

Dr. Ineke Lunsing

Dr. Ineke Lunsing

Paediatric Neurologist

University Medical Center Groningen (UMCG) · Netherlands

Emergency protocol contributor

Paediatric neurologist at UMCG, with expertise in neurometabolic disorders, neonatal neurology and developmental disorders. She is part of the hospital's expertise centre for rare genetic disorders and its neurometabolic treatment team.

Researchers & Scientists

Scientists investigating the mechanisms, genetics and treatment of ANE.

Dr. Nathalie J. Arhel

Dr. Nathalie J. Arhel, PhD

CNRS Research Director

Centre national de la recherche scientifique (CNRS) · France

Emergency protocol contributor

Research Director in immunovirology, focusing on RANBP2 biology, nuclear pore function, influenza virus infection, and the inflammatory mechanisms underlying ANE.

TM

Dr. Theo Moraes, MD, PhD

Clinician-Scientist, Respiratory Medicine

The Hospital for Sick Children (SickKids), University of Toronto · Canada

Clinician-scientist and respirologist at SickKids and Senior Scientist in Translational Medicine, University of Toronto. His laboratory studies respiratory viruses and the regulation of mRNA translation by the nucleoporin RANBP2/Nup358 — biology central to ANE.

Dr. Alex Palazzo

Dr. Alex Palazzo

Professor, Department of Biochemistry

Temerty Faculty of Medicine, University of Toronto · Canada

Emergency protocol contributor

Molecular biologist investigating the role of RanBP2 in regulating gene expression and cytokine production in response to viral infection and the innate immune response.

Hsiuyi Chen

Hsiuyi Chen

Senior Scientist

A*STAR Infectious Diseases Labs · Singapore

Geneticist investigating the genetic mutations and structures that cause ANE.

Are you a clinician or researcher working on ANE?

We're building an international network of specialists to strengthen care, research and awareness for families affected by ANE. If you diagnose, treat or study the condition, we'd love to hear from you.

Get in touch

Connect with the ANE community

ANE International was established in 2016 by families affected by ANE. These groups bring together families, clinicians and researchers worldwide.

ANE Support GroupPrivate group

For individuals and families with a medical diagnosis of ANE — shared experience, social and moral support.

ANE/RanBP2 Research GroupFor clinicians & researchers

Sharing and discussion of articles and reports on ANE and the RANBP2 gene.

Follow us on Facebook and Instagram for awareness campaigns, research news and family stories.

© ANE International · aneinternational.org — Supporting families affected by Acute Necrotizing Encephalopathy, advancing research, and raising awareness worldwide.