The Williams Syndrome Clinic at Boston Children’s Hospital provides specialized and comprehensive evaluation and clinical care for children who have an established diagnosis of Williams syndrome.
Organized by the Center for Cardiovascular Genetics, our clinic works closely with children who have heart conditions related to Williams syndrome. But we also serve as a hub of care, coordinating treatment with clinicians from other Boston Children’s specialties to ensure children benefit from specialized care for and beyond the heart.
We believe that early developmental evaluations are important as they allow for the identification of challenges when they begin and are most amenable to intervention services. We also believe that anticipatory guidance to monitor for potential medical complications (for example, hypercalcemia or thyroid disease) keeps children as healthy as possible. Many families return to the clinic every two to three years for updated evaluations and recommendations they can take home to local therapists, schools, and doctors who may not be as familiar with this rare diagnosis.
Why should you choose the Williams Syndrome Clinic?
Children with Williams syndrome often require medical attention from many different subspecialists. The Williams Syndrome Clinic is designed with that thought in mind. We coordinate numerous specialty visits for your child in a three-day time frame. Our team is comprised of clinicians from a range of specialties, including cardiology, cardiovascular genetics, neuropsychology, psychiatry and behavioral sciences, audiology, occupational therapy, physical therapy, and speech-language pathology.
We work together to ensure your child receives comprehensive care, all at one hospital. Our team model enables specialists to communicate your child’s progress with each other so that the entire team is familiar with your child’s overall health and can together develop a treatment plan. We are personally invested in finding solutions for children with Williams syndrome who have not found answers elsewhere.
Because of our team’s more than 25 years of experience working with children who have Williams syndrome, we understand how to develop the most appropriate strategies to address any challenges your child faces. We’re there for your family — from a diagnosis to the many steps in the years going forward.
What does a typical visit to the Williams Syndrome Clinic look like?
A visit to the Williams Syndrome Clinic is a three-day experience during which your child meets with our various providers. While actual schedules may vary, a typical schedule may look like the following:
Day 1
- Echocardiogram
- Cardiology
- Speech and Language Pathology
- Audiology
Day 2
- Occupational Therapy
- Physical Therapy
- Cardiovascular Genetics
Day 3
- Neuropsychology Testing
- Behavioral Psychology
Once you have met with all the specialists for your care, we convene to collaborate and develop an overall treatment plan.
