expertise and specialized care

Angelman Syndrome Clinic Network

By partnering with leading medical and research institutions across the country, the ASF founded the Angelman Syndrome Clinics to provide individuals with AS, from birth through adulthood, the comprehensive medical care they need throughout their lifetime.

In 2019, the ASF and Dup15q Alliance have combined their respective clinic networks to create the 15q Clinical Research Network in order to expand the reach of the clinic network.

15Q Clinical Research Network map

Specialized Care

Each Angelman Syndrome Clinic is completely comprehensive yet has its own unique capabilities that leverage the expertise and specialized care available from each partnering organization. At the clinics, individuals have access to a variety of professionals all specializing in AS and syndromes affecting the 15th chromosome:

  • Clinical geneticist
  • Neurologist
  • Psychiatrist
  • Psychologist
  • Speech Language Pathologist
  • Physical/Occupational Therapist
  • Genetic counselor
  • Social worker
  • Nutritionist

The 15q Clinical Research Network provides a foundation to support future clinical trials by having established sites with experts and patients in place to conduct those trials when they become available.

 

Published Research

The clinicians are also able to contribute to research and provide best practices for caring for individuals with AS. Below is a list of published work that has come out of 15q Clinics:

Mayo Clinic
Anesthetic Considerations for Angelman Syndrome: Case Series and Review of the Literature

Iron Deficiency and Its Role in Sleep Disruption in Patients With Angelman Syndrome

15Q Clinical Research Network Coordinator

Zoe Dannenberg
coordinator@15qclinicalresearchnetwork.org.

Zoe works closely with clinicians, industry partners and families, to help strengthen the 15q clinic network and its impact on research. She is dedicated to assisting families with clinic visits and clinical trials, as well as answering questions about clinic services, procedures and any other concerns.

Zoe Dannenberg

More about the Clinics

Watch an interview with ASF Clinical Network Director, Elizabeth Jalazo, MD to learn more about the clinic network.