Clinical Care Toolkit

The Angelman Syndrome Clinical Care Toolkit has been developed in close collaboration with leading medical professionals through the LADDER Learning Network, researchers, and the ASF. It is based on the most current scientific evidence and clinical experience, providing a trusted resource that can support and empower health-care providers in their care of individuals with Angelman syndrome. Included are:

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

Standards of Care

Published in 2023: A multidisciplinary approach and consensus statement to establish standards of care for Angelman syndrome. This document is a framework for providers of all familiarity levels.

Seizure Treatment Guidelines

Seizures in Angelman syndrome have some unique characteristics and treatment and this document should help someone who is unfamiliar with AS.

Management of Nonconvulsive Status Epilepticus (NCSE)

Up to 50% of patients with AS will have non-convulsive status epilepticus (NCSE) with myoclonic or atypical absence status. This document provides guidance on the outpatient management of patients with AS and NCSE.

Myoclonus in Angelman Syndrome

Published in 2018: Records of 185 people with AS were reviewed for reports of myoclonic seizures. They studied genotypes, age of onset and what, if any, medication was effective in minimizing myoclonic seizures.

General Anesthesia Best Practices

Tips & Guidelines for Caregivers: General anesthesia may be required for some non-surgical procedures that other people can safely have without anesthesia. Anesthesia for individuals with Angelman syndrome is safe, and the risk is generally no different than for someone without Angelman syndrome.

Physical Therapy & Occupational Therapy

Created by a certified physical therapist with a history of working with individuals with AS. This document is intended to be a support document for therapy teams to support their efforts while working with individuals with AS.

Aspiration Prevention

This document provides practical information and tips about aspiration, risks with Angelman syndrome, and ways to prevent it.

The mission of Angelman Syndrome Foundation is to advance the awareness and treatment of Angelman syndrome through education and information, research and support for individuals with Angelman syndrome, their families and other concerned parties. We exist to give all of them a reason to smile, with the ultimate goal of finding a cure.

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