Angelman

Angelman Syndrome Clinics

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Angelman Syndrome Clinics

About the Clinics

The Angelman Syndrome Foundation has been the leader in creating a “one-stop-shop” medical resource for individuals with Angelman syndrome and their families or primary caregivers.  By partnering with leading research and medical institutions across the country, the ASF founded the Angelman Syndrome Clinics to provide individuals with AS the comprehensive medical care they need under one roof.  Previously, individuals would have to visit multiple clinics 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. 

At the Angelman Syndrome Clinics, individuals have access to a clinical geneticist, neurologist, psychiatrist, psychologist, speech language pathologist, physical/occupational therapist, genetic counselor, social worker, and nutritionist all specializing in Angelman syndrome.  Each clinic also has its own unique capabilities that leverage the variety of expertise and specialized care available from each partnering organization. 

Currently, there are two Angelman Syndrome Clinics established, with more planned for the future.  The ASF is evaluating future sites with the ultimate goal of establishing clinics across the entire country to make access more convenient for all individuals.

Click here to view photos from the clinic openings.

Clinic Locations

Angelman Syndrome Clinic at University of North Carolina, Chapel Hill
Established in partnership with UNC and the Carolina Institute for Developmental Disabilities

The comprehensive medical services available at the Angelman Syndrome Clinic at UNC at Chapel Hill leverage the extensive experience of the Carolina Institute for Developmental Disabilities right next door.  The medical professionals at the CIDD have expertise in a number of developmental disorders that enable it to provide a unique perspective in its delivery of clinic services.  The clinic is structured to provide patients and families with a comprehensive and less stressful experience by scheduling appointments with all Angelman syndrome clinicians to occur during the same visit. 

Contact information:
101 Renee Lynne Court
Carrboro, NC 27510
Christie Turcott, Clinical Coordinator
(919) 966-2074

 

Angelman Syndrome Clinic at Massachusetts General Hospital
Established in partnership with Massachusetts General Hospital

The Angelman Syndrome Clinic at MGH in Boston has the unique capability to serve individuals with Angelman syndrome from infancy through adulthood.  Adults with AS have very unique needs but unfortunately go largely underserved—until now.  The Angelman Syndrome Clinic at MGH and the neighboring Lurie Center for Autism offer expertise in the many issues facing older teens and adults with AS, such as transitions, residential placement, guardianship, and adult services.  The clinic is designed to offer families assistance in how to navigate these difficult times and make the best decisions for not only the individual with AS but the whole family.

Furthermore, the Angelman Syndrome Clinic at MGH provides access to a number of Angelman syndrome experts who have identified therapies that help individuals with AS manage the challenging symptoms of AS.  Dietary treatments championed by Dr. Elizabeth Thiele, Dr. Ron Thibert, and Heidi Pfeifer have proven successful in reducing seizures in individuals with AS, specifically the low-glycemic index treatment (LGIT diet), in addition to other treatments for other symptoms. 

Contact information:
55 Fruit St.
Boston, MA 02114
Elias Shaaya, Clinical Coordinator
(617) 726-6540
Patients must first speak with patient services coordinator Veronica Robinson


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