Williams syndrome clinics are "specialty" clinics often located in children's hospitals. They are established to provide a place where parents can bring their children to see specialists with an excellent knowledge of Williams syndrome. It is not essential to bring your child to a WS clinic but it can be very helpful, especially for an initial, complete evaluation or when a serious problem is suspected.
WS clinics can provide medical evaluations by several different specialists during a single 1 - 2 day visit, as well as evaluations by therapists that can often be used to help access services for your child locally. There are several Williams syndrome clinics around the United States, and their offerings vary. It's important to call and find out exactly what services the clinic nearest you can provide.
If you can, get a referral from your physician to the clinic you would like to visit. This will help you obtain insurance coverage for the visit. Anytime you visit either a WS Clinic or your local physicians please tell them about the new IDC-10 diagnostic code for Williams syndrome, and ask them to put it in their records of use on all procedure reports. ICD-10 codes are used primarily by insurance providers but they are also extremely important to the research community. Your physicians use of the ICD-10 code specific to Williams syndrome can truly make a difference for future research on Williams syndrome.
The current Williams syndrome clinics are:
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Arkansas |
Massachusetts |
New York |
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Note: Dr. Tom Collins (formerly at Arkansas Children's)
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Mass General Hospital |
UBMD Pediatrics
1001 Main Street, 5th Floor
Buffalo, NY 14203
Dr. Laurie Sadler, Director
(716) 323-0040
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Florida |
The Children's Hospital, Boston* |
Children's Hospital of Montifiore Center for Congenital Disorders |
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Newmours Children’s Health System Cardiac Center 407-650-7715
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Pennsylvania |
Missouri |
Utah |
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Children's Hospital of Philadelphia |
St. Louis Children's Hospital* |
Primary Children's Medical Center |
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Ohio |
California |
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Nationwide Children's Hospital* |
Lucile Packard Children's Hospital/Stanford University
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*Clinic Notes:
Boston Children's Hospital: The clinic has been providing interdisciplinary evaluations for children and adolescents with Williams syndrome since 1990. Participants in this program undergo a three day assessment by specialists with extensive experience in caring for children with Williams syndrome. Specialty evaluations include a medical evaluation with Dr. Amy Roberts, a cardiac evaluation with Dr. Leslie Smoot, neuropsychological testing, psychopharmacological assessment (if age appropriate), a behavioral psychology evaluation, a hearing test, a speech and language evaluation, a physical therapy evaluation, and an occupational therapy evaluation.
St. Louis Children's Hospital: St. Louis Children's Hospital and Washington University specialists that commonly care for individuals with Williams syndrome include Genetics, cardiologists, endocrinologists Nephrologists, Ophthalmologists, ENTs, Orthopedic Surgeons, and Urologists. In addition, individuals with Williams syndrome often benefit from the involvement of specialized therapy services including Physical, Occupational and, Speech Therapists, Feeding Teams, and Behavioral and Psychological Therapists.
Nationwide Children's Hospital: The Williams syndrome Clinic multidisciplinary team includes a Developmental-Behavioral Pediatrician, Psychologist, Speech/Language Pathologist, Music Therapist, Occupational Therapist, Physical Therapist, Nurse, and Social Worker. Families can also choose to have their child seen by other medical specialists who are familiar with Williams syndrome, such as Cardiology, Endocrinology, Nephrology, Audiology, and Opthalmology. Families can stay in the Ronald McDonald House (world’s largest!) if needed.