The Angelman Syndrome Foundation has been the leader in creating a “one-stop-shop” medical and psychosocial resource from birth through adulthood for individuals with Angelman syndrome and their families and primary caregivers. By partnering with leading medical and research institutions across the country, the ASF founded the Angelman Syndrome Clinics to provide individuals with AS the comprehensive medical care they need throughout their lifetime. Previously, individuals would have to make multiple appointments at different times and locations to access the many resources necessary to address all of their needs. The Angelman Syndrome Clinics reflect the ASF’s mission and commitment to providing individuals with AS and their families the direct support they need to help improve quality of life.
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 individuals all specializing in AS:
|• Clinical geneticist||• Physical/occupational therapist|
|• Neurologist||• Genetic counselor|
|• Psychiatrist||• Social worker|
|• Psychologist||• Nutritionist|
|• Speech language pathologist|
The Angelman Syndrome Clinics also provide a foundation to support future clinical trials by having established sites with AS experts and patients in place to conduct those trials when they become available.
Network of Clinics Throughout the Country
The ASF has committed more than $1.5 million to establish 17 clinics across the country during the next few years. The ASF has strategically identified locations that are within a 4-hour driving distance for more than 85% of the AS population in the U.S.—meaning a majority of families (>85%) in the U.S. will not have to travel more than four hours to access their nearest clinic, which is a primary goal of the ASF’s in making the clinics as accessible as possible. Each clinic will receive a three-year funding commitment of $50,000 the first year, $30,000 the second year, and $10,000 the third year, to establish the clinics and support them until they are self-sustaining.
Currently, there are two Angelman Syndrome Clinics established in Chapel Hill, NC and Boston, MA. The ASF is in the final stages to open the next clinic in Rochester, MN and has requested proposals to establish the next clinics in San Diego and Houston, with Chicago to follow. In alphabetical order, future target cities include Atlanta, Cleveland, Dallas, Denver, Jacksonville, New York, Philadelphia, Salt Lake City, San Francisco, Seattle and St. Louis.
Click here to view photos from the clinic openings.
Angelman Syndrome Clinic at Massachusetts General Hospital
Established in partnership with Massachusetts General Hospital and the Lurie Center for Autism
55 Fruit St.
Boston, MA 02114
Elias Shaaya, Clinical Coordinator
Patients must first speak with patient services coordinator Veronica Robinson
Chapel Hill, NC
Angelman Syndrome Clinic at University of North Carolina, Chapel Hill
Established in partnership with UNC and the Carolina Institute for Developmental Disabilities
101 Renee Lynne Court
Carrboro, NC 27510
Megan Mann, Clinical Coordinator