Resources for Healthcare Providers and Families

Appeals
Letters of Medical Necessity (LMN)

My patient______________________ has been diagnosed with Aicardi syndrome. Aicardi syndrome is a genetic condition that typically includes developmental brain abnormalities, seizures, and differences in the retina. Intellectual disability, low muscle tone or hypotonia, visual impairment, and gastrointestinal issues such as constipation, diarrhea, and gastroesophageal reflux are common medical issues. Some individuals with Aicardi have problems regulating their body temperature and many have skin changes that can include cancerous growths.
(Dr. Leah Burke, VT Regional Genetics Center)

Family Voices
Genetics Education Materials for School Success (GEMSS)
New Family Contributors to GEMSS