How do I find a center of excellence in Angelman syndrome?
As of February 1, 2016, there are no centers of excellence in Angelman syndrome. However, the Angelman Syndrome Foundation has worked with specialists in Angelman syndrome to establish specialty clinics at locations in the United States so that many families with Angelman syndrome will have to travel no more than 4 hours to see a team of experts who treat Angelman syndrome. As of February 1, 2016, clinics are located at:
- Angelman Syndrome Clinic at University of North Carolina, Chapel Hill (Chapel Hill, NC)
- Angelman Syndrome Clinic at Massachusetts General Hospital (Boston, MA)
- Angelman Syndrome Clinic at Mayo Clinic Rochester (Rochester, MN)
- Angelman Syndrome Clinic at Cincinnati Children's Hospital (Cincinnati, OH)
The Autism Syndrome Foundation has requested proposals to establish multi-specialty Angelman syndrome clinics in several cities. For more information, you can go to:http://www.angelman.org/angelman-syndrome-clinics/.
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What specialist doctors should someone with Angelman syndrome see?
Individuals with Angelman syndrome are typically seen by several different specialists, including:
- Clinical geneticist: to evaluate, diagnose and help manage the diagnostic process
- Neurologist: to monitor and treat movement or balance disorders and seizures
- Developmental/Behavioral Pediatrician: to monitor and treat developmental and behavioral issues
- Sleep specialist: to monitor and treat sleep disturbances
Many Angelman Syndrome specialty clinics also work with psychiatrists, psychologiests, speech/language pathologists, genetic counselors, social workers and nutritionists, to help maximize total health and well-being.