Medical Information and Emergency Preparedness

Medical Resources

Angelman syndrome can present unique medical issues. This page lists resources developed by medical experts and clinicians at the ASF Angelman Syndrome Clinics. These resources can be helpful in preparing for medical procedures or they can be used by medical professionals to address medical issues. 

Medical & Social Service Referrals

The ASF has partnered with Unite Us, to provide local referrals for medical and social service providers.

Standards of Care for Angelman Syndrome 

Published in 2022, this collaborative project documents common issues that accompany Angelman sydnrome and the most common and established ways of providing care for the issues. 

Prepare your Individual with AS for General Anesthesia

Prepared by anesthesiologists who work with patients with AS, this guide will inform you about what to expect and how to prepare for your individual to undergo anesthesia. 

ASF State Insurance Resource Guide

State-by-state list of insurance  information about government agencies, waivers, contact information and more. 

Webinar: Emergency Medical Considerations for Individuals with AS

Justin Grill, DO, MHA, M.EdHp, discusses issues that involve individuals with AS and their interaction with the emergency department. He discusses strategies to make the best of a visit to the ER and specific intervention information on topics such as trauma, toxicology (poisonings) and fevers.

Comprehensive Care Binder (Adults)

Use this to track every day needs and transition of care for your teen or adult with AS. 

Comprehensive Care Binder (Children)

Track the every day needs for your child with AS including medication, equipment, contacts and more.

Clinical Care Tool Kit

This comprehensive document combines several resources for caregivers and clinicians into one document. Included are: 

  • Overall Standards of Care
  • Seizure Treatment Guidelines
  • Management of Nonconvulsive Status Epilepticus
  • General Anesthesia Best Practices
  • Myoclonus in AS
  • Physical Therapy and Occupational Therapy Best Practices
  • LADDER Learning Network