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Williams Syndrome Clinics

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.

The current Williams syndrome clinics are:

Arkansas

Massachusetts

New York

Note: Dr. Tom Collins (formerly at Arkansas Children's) has moved to Lucille Packard Children's Hospital in San Francisco, CA - see clinic information below.

 

Mass General Hospital
55 Fruit St.
Boston, MA 02114
Dr. Barbara Pober, Director
Sandy (617) 726-1561

Website

John R. Oishi Children's Hospital
Buffalo Niagara Medical Center
Buffalo, NY 14222
Dr. Laurie Sadler, Director
(716) 878-7530

Website

Note:this is a new location beginning in Nov 2017

Florida

The Children's Hospital, Boston*
300 Longwood Ave.
Boston, MA 02115
Dr. Leslie Smoot, Director
Liz Bain (617) 355-5429

Website

 

Children's Hospital of Montifiore Center for Congenital Disorders
3415 Bainbridge Ave.
Bronx, NY 10467
Dr. Robert Marion, Director
(718) 741-2323

Website

Newmours Children’s Health System Cardiac Center/Williams syndrome program
Gul H. Dadlani, MD Chief, Pediatric Cardiology
13535 Nemours Parkway 4th Fl., Orlando, FL 407-650-7715
Website

 

Pennsylvania

Missouri

Utah

Children's Hospital of Philadelphia
Williams Syndrome Multispecialty Clinic
34th St. & Civic Center Blvd.
Philadelphia, PA 19104
Daria Tolentino (215) 590-3376
(After call is connected, you will choose option #3, then option #2)

Website

St. Louis Children's Hospital*
Williams Syndrome Center
One Children's Place
St. Louis, MO 63110
Dr. Beth Kozel, Director
(314) 454-6093 (choose 3 after the prompt)

Website
 

Primary Children's Medical Center
Adult Congenital Heart Disease Clinic
100 North Mario Capecchi Dr.
Salt Lake City, UT 84113
Angela Yetman, MD
Nancy M. Veit (801) 662-5462
CARDIOLOGY ONLY

Website

Ohio

California

 

Nationwide Children's Hospital*
700 Children's Dr. Columbus, OH 43205
Directors: Jennifer Walton, MD and Marilee Martens, PhD
To schedule an appointment: Julie Piercefield: (614) 722-6115. 
Website

Lucile Packard Children's Hospital
730 Welch Rd
Palo Alto, CA 94304
Call (650) 721-2121
Director – Dr. Tom Collins
Website

 


 

 

*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 NephrologistsOphthalmologistsENTsOrthopedic 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 CardiologyEndocrinologyNephrologyAudiology, and Opthalmology. Families can stay in the Ronald McDonald House (world’s largest!) if needed.