Improving the lives of children with autoimmune brain disorders.
Image credit: Ben White
Children's Autoimmune Brain Disorder Association is dedicated to improving the quality of life for children with autoimmune brain disorders through awareness, research, education and support.
Autoimmune brain disorders are Autoimmune Encephalitis (AE) including Limbic Encephalitis, Anti-NMDAR, Bickerstaff Brain Stem Encephalitis, Acute Disseminated Encephalomyelitis and Hashimoto Encephalopathy and Post-infectious Autoimmune Encephalopathy (PAE), which is also referred to as Pediatric Autoimmune Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS). Both AE and PAE seriously impact health and functioning for the child and family.
Initial symptoms of autoimmune brain disorders often resemble pure psychiatric illness and many children experience delays in diagnosis and treatment. Early recognition and treatment help to prevent chronic long-term disability and lead to the best outcomes. We believe by focusing our advocacy efforts on awareness, education, and research, while supporting children and families, we will reduce the delay to treatment, thereby minimizing disability and leading to a better quality of life. We envision a world where all children who suffer the devastating rapid onset of an autoimmune neurological illness will receive prompt world-class health care and will just as rapidly be restored to health through astute evidence-based medical care..
We will create awareness for parents, educators, pediatricians, psychologists and psychiatrists, and others by providing information about the etiology, symptoms, course, impact on behavior and function, and management of the challenging aspects of these autoimmune brain disorders.
Greater public awareness creates the need for more knowledgeable doctors. To meet that need, we will disseminate current, evidence-based information through educational campaigns, regional conferences, and collaboration with multi-disciplinary specialty clinics.
We will fund strategic, high-quality research studies by partnering with clinical research facilities and other organizations to advance effective treatment and search for a cure.
We will connect children and their families in crisis to community resources, facilitate in-person local support groups and plan community-building special events.