Resources

Medical Academy of Pediatrics & Special Needs (MAPS)

The Medical Academy of Pediatrics & Special Needs (MAPS) is a non-profit organization and network of practitioners dedicated to providing continuing medical education, conferences, and fellowship-training for clinicians in the assessment and treatment of children and young adults with neurodevelopmental, neuroimmune, and complex chronic conditions.

Folate Receptor Antibody Testing (FRAT)

The FRAT® is a blood test developed at SUNY Downstate Medical Center that detects autoantibodies against the folate-receptor-α (FRα), which cause an impairment in the transport of folate into the brain and cerebrospinal fluid. These autoantibodies have been documented in conditions such as Cerebral Folate Deficiency (CFD), Autism Spectrum Disorder (ASD), Pediatric Acute Neuropsychiatric Syndrome (PANS), Schizophrenia, Major Depressive Disorder and neural-tube defects

Neuroimmune Foundation

The Neuroimmune Foundation is a 501(c)(3) nonprofit that supports families affected by neuroimmune and immunopsychiatric disorders through education, advocacy, and access to knowledgeable physicians.

Stanford University - Immune Behavioral Health Clinic

Lucile Packard Children’s Hospital Stanford was the first public institution to start a PANS service in 2012 and also has an outpatient clinic called the Immune Behavioral Health Clinic, serving children with PANS and PANDAS. They hosted the first national PANS conference in the spring of 2013 where they worked to create clear diagnostic guidelines.

IntellxxDNA

IntellxxDNA™ is a clinical decision support tool that provides genomic data and analytics based on gene-to-gene and gene-to-environment interactions through SNP technology. IntellxxDNA™’s data and analytics look at the complex intricacies of a patient’s genomic profile and how small variations within their DNA affect their quality of life and health risks. It includes evidence-based, well-researched potential intervention strategies – encompassing environment, lifestyle, nutrition, supplements and medications. These components make the reports accessible and actionable for ease-of-use in clinical decision-making.

The Look. Foundation

The Look. Foundation supports children and young adults impacted by infection triggered neuroinflammatory disorders (e.g., PANS/PANDAS) through personal support, community-wide education, professional training, advocacy and grants. We strive to improve access to proper diagnosis and treatment, bringing hope and healing to struggling families.

Probably Genetic

Probably Genetic is a leading company in the field of genetics, specializing in the detection of rare genetic diseases using simple DNA tests. Probably Genetic helps undiagnosed rare disease patients find answers to their symptoms in a matter of weeks. There are over 400 million people worldwide that have a rare disease — half of those patients are currently undiagnosed and half of them are children. It takes 5-7 years on average for these patients to get a diagnosis. The online Symptom Checker identifies rare disease patients using state-of-the-art machine learning models, gets them tested through our direct-to-consumer genetic testing service, and helps connect these patients to potentially life-saving treatments and advocacy communities. Probably Genetic partners with drug developers to offer sponsored testing programs that allow patients to access genetic testing for little to no cost.