Angelman Syndrome Clinic Network

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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.

Recently, 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 2019

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 also 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.

Standards of Care for Angelman Syndrome

The AS Clinics are currently developing standards of care and consensus of care in Angelman syndrome. These standards and consensus of care will provide you and your physician with the proper information and care your loved one with AS needs. Once completed, the ASF will publish these and make them available for download on the ASF website for families and their local physicians.

One of the many benefits AS families experience at all AS Clinics is that the clinicians are truly AS experts. From evidence-based support and clinical data from more than 500 patients seen to date, the AS clinical experts understand from first-hand experience the natural history of AS, seeing and knowing the trajectory of AS from birth through adulthood, while providing excellent, comprehensive and appropriate medical care specific to AS. This clinical experience and collaboration between all of the AS Clinics within the ASF AS Clinic Network are critical to developing standards of care and guidelines for our loved ones with AS.

AS Clinical Care + AS Clinical Research + ASF AS Clinic Network Funding = Outstanding Care & Outcomes Today and for the Future!