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 ICD-10 diagnostic code for Williams syndrome, which is #Q93.82. Ask them to put it in their records and 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 nationwide clinical consortium, which was established in 2020 by the WSA through a gift from Judy and Mike Van Handel, was created to accelerate the pace of research and the quality of life for those with Williams syndrome.
The WS clinical consortium is currently in the process of describing best practices to standardize and improve clinical care worldwide. There are currently nine clinics nationally recognized by the Williams Syndrome Association for multidisciplinary care focusing on cardiovascular, gastrointestinal and neurodevelopment topics. If you are interested in becoming a WSA clinic, please contact our Executive Director, Dr. Mary Van Haneghan.
