PANDAS / PANS

During the 99th session of the Illinois General Assembly, a bill became law that created an advisory committee on 2 conditions called PANDAS and PANS (P.A. 99-0320). The first meeting of this newly constituted Advisory Council was held in March of 2016. PANDAS is an acronym for a condition called Pediatric Autoimmune Neuropsychiatric Disorder Association with Streptococcal Infections. PANS is an acronym for Pediatric Acute-onset Neuropsychiatric Syndrome. PANDAS and PANS are autoimmune, encephalopathic disorders characterized by changes in neurologic function, mood, and behavior. The conditions are relatively rare and were identified in the 1980’s when investigators at the National Institutes of Health (NIH) identified a subset of children with obsessive-compulsive disorder who had a sudden onset of their psychiatric symptoms, typically following an infection of some kind. Other states have recently developed advisory and work groups addressing these conditions as well in order to raise awareness and provide input and direction to their State’s on raising awareness among parents, clinicians, schools and others about the existence of these conditions and recommendations related to what can be done to identify ways to promote access to care and treatment.

IDPH will be posting information on this website related to our own State’s Advisory Council activities including the statutorily mandated annual reports ( January 1 of each year), agendas and minutes of meetings, resources and links, and any other pertinent information.

PANDAS Advisory Committee Meeting Agendas – 2017

PANDAS Advisory Committee Meeting Minutes – 2017

PANDAS Advisory Committee Meeting Agendas – 2016

PANDAS Advisory Committee Meeting Minutes – 2016

Resources:

National Institutes of Mental Health (NIMH)

The National Institute of Mental Health (NIMH) has basic information available on PANDAS and PANS disorders, along with specific diagnostic and treatment information.

The NIMH can offer support to physicians and families at ocdresearch@mail.nih.gov

PANDAS Physician Network

The PANDAS Physicians Network (“PPN”) is a 501(c)(3) organization whose function and mission are to help medical professionals better understand the PANDAS and PANS diseases. These efforts are accomplished through publication and sharing of information and networking amongst physicians. PPN has an advisory body with representation from a variety of specialties and academic medical institutions in the United States. The advisory group have all worked with, treated, or studied the patients or aspects of the disorder.

PANDAS Network

PANDAS Network is a 501 (c) (3) organization that is dedicated to improving the diagnosis and treatment of children with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). This organization was formed by parent of children who had been afflicted with PANDAS/PANS to encourage research, raise public awareness, provide family support, and gather data and resources to better inform parents and the medical community about PANDAS and PANS.

PANDAS/PANS Advocacy and Support (PAS)

PAS was established in 2011 to offer support groups to families and create public awareness of Pediatric Autoimmune Neuropsychiatric Disorders specifically within Illinois. This local group has grown exponentially since its inception and has recently expanded its role as a national 501(c)(3) to include advocacy, grant giving, and collaboration with other PANDAS/PANS organizations and medical institutions.

Academic Consensus Statements and Presentations