The Autoimmune Encephalitis Alliance, along with Children’s National Health System, and the Childhood Arthritis and Rheumatology Research Alliance, co-sponsored the first International Pediatric Autoimmune Encephalitis Treatment Consensus Meeting at the Carnegie Endowment for International Peace in Washington, DC, on November 14.
“The AE Alliance was honored to help bring many of the world’s leading experts together in one room to discuss pediatric AE,” says John Spencer, the organization’s executive director.
The meeting’s organizers from Duke University Medical Center, Texas Children’s Hospital, Children’s National Health System and Alberta Children’s Hospital set goals for the group to begin working on such as developing treatment roadmaps for initial treatment and maintenance therapy for pediatric AE, standardizing approaches to diagnosis, initial treatment, maintenance immunotherapy, disease surveillance, biomarker discovery, supportive care, and multidisciplinary coordination, and aligning research priorities and plan future collaborative work.
In addition, several parents and grandparents of pediatric patients with AE participated in the meeting, sharing their perspectives with the doctors. “Hearing from patients and caregivers helps to inform how we prioritize the work we do,” says Heather Van Mater, pediatric rheumatologist with Duke Children’s Health Center and co-director of Duke Children’s Inflammatory Brain Disease Program.
Autoimmune encephalitis is a rare and serious condition where the immune system attacks the brain, resulting in impaired brain function. The Autoimmune Encephalitis Alliance seeks to improve the lives of patients with AE by creating a community of patients, families and caregivers and striving to find a cure through multi-disciplinary, collaborative research and clinical care.
A special thank you to Dr. Susanne Bensler, Dr. Eyal Muscal, Dr. Heather Van Mater, and Dr. Elizabeth Wells for organizing the meeting. Great appreciation also to Lauren Lytle of Children’s National Health System and AEA board member Alicia Garceau Halbert for attending the meeting and contributing this post.