Williams Syndrome Clinic
Caring for Children and Adults With Williams Syndrome
Williams Syndrome Clinic at Nationwide Children's Hospital
The Williams Syndrome Clinic at Nationwide Children's uses an interdisciplinary model to bring together experts in a host of specialties to provide unmatched care for children and adults with Williams syndrome. Our care teams include a central physician (usually a geneticist or developmental pediatrician) and specialists (cardiologist, psychologist, endocrinologist, nephrologist, gastroenterologist, therapy services and more) chosen to meet each person's health care needs. Because the team works together, each individual's care plan includes shared input from all involved disciplines and are optimized to incorporate the most up to date research findings. Since 2007, families from around the U.S. and around the world have traveled to our clinic for care.
Our team has published dozens of articles covering best practices for Williams syndrome. The Nationwide Children’s Williams Syndrome Clinic is a member of the U.S. Williams Syndrome Clinical Consortium and the Collaborative Registry for Williams Syndrome (CReWS).
Our Services
The Williams Syndrome Clinic offers the right fit for your family. Services are individualized and may include focused consultation regarding a limited number of medical problems or a comprehensive second look evaluation from a team of specialists with special attention to the unique medical, developmental and behavioral problems experienced by people with Williams syndrome. We also see children and adults with Williams syndrome for ongoing health maintenance. Laboratory and radiologic assessments are arranged as needed.
Our team works closely with many pediatric teams, including:
- Anesthesiology and Pain Medicine
- Audiology
- Cardiology
- Clinical Therapies (including speech, occupational and physical therapy)
- Developmental and Behavioral Pediatrics
- Endocrinology
The team also collaborates with adult providers in many of the same specialties. Your team will help you transition to adult providers to ensure continuity of care from youth to adulthood.
Services may be covered by insurance. Our team will work with you to understand resources that may be available to you. To expedite insurance coverage, we recommend a referral be sent to the clinic by the individual’s primary care physician. It is also recommended that the family contact their insurance company prior to visiting the clinic. Travel and housing information is available for families visiting the clinic over more than one day.
Meet Our Team
Our team aims to provide collaborative, innovative and up-to-date care which is personalized for every patient. Our core team of providers has many years of experience in caring for children and adults with Williams syndrome. Our team regularly engages in clinical research related to Williams syndrome and presents at national meetings and conventions.
We are excited to introduce Beth Kozel, MD, PhD, who joined our team this summer as the division chief of Genetic and Genomic Medicine and director of Constitutional Genomics Translational Research in the Steve and Cindy Rasmussen Institute for Genomic Medicine. Our team has decades of experience in pediatrics, genetics and genomics, psychology and cardiology.
Beth A. Kozel
Beth Kozel, MD, PhD, is a clinical geneticist and researcher specializing in Williams syndrome. Her expertise lies in understanding the effects of decreased elastin on cardiovascular and connective tissue health, with particular interest in gene changes that may influence the need for cardiovascular surgery. She combines clinical care with research to explore how genetic alterations in Williams syndrome influence vascular development, disease mechanisms and long-term health outcomes.
Elizabeth W. Barnhardt
Elizabeth Barnhardt, DO, MAEd, a developmental pediatrician at Nationwide Children's, specializes in the care of children with Williams syndrome. Her expertise includes evaluating developmental delays, addressing behavioral and mental health challenges, and managing the complex medical and educational needs associated with the condition, providing personalized care to support optimal growth and development in her patients. She is interested in researching the overlap between Williams syndrome and autism as well as other mental health conditions such as attention-deficit/hyperactivity disorder and anxiety. She is also passionate about medical education and is engaged with learners at multiple levels of training.
Jessica L. Bowman
Jessica Bowman, MD, a pediatric cardiologist at Nationwide Children's, specializes in the cardiovascular care of individuals with Williams syndrome. Her expertise includes diagnosing and managing congenital heart and vascular conditions linked to the syndrome. She combines clinical care with research to advance understanding and improve outcomes for these unique cardiovascular challenges.
Rebecca M. Lyren
Rebecca (Becca) Lyren, PhD, a psychologist at Nationwide Children's, specializes in the psychological and developmental aspects of Williams syndrome. Her expertise includes assessing cognitive, emotional, and behavioral functioning. Through clinical care and research, she develops targeted interventions to support social skills, learning, development, and mental health, enhancing outcomes for individuals with Williams syndrome.
Why Choose Nationwide Children's?
It's not just who treats your child that makes a difference at Nationwide Children's. It's how your child is treated here. Our team includes specialists and world-leading experts who love treating kids. Helping kids feel better is our purpose and what drives the team each day. It's why we do what we do.
The Williams Syndrome Clinic provides comprehensive care. Experts from different specialties meet monthly to discuss each patient and engage in shared decision-making.
Mental Health and Williams Syndrome
Part of this interdisciplinary care model includes ongoing management options for mental health care. Psychology works collaboratively with the medical team in joint visits, so families can receive a comprehensive plan to support their child. This can include both medication management and behavioral strategies. Dr. Barnhardt and Dr. Lyren understand the unique overlap between Williams syndrome and autism spectrum disorder and can provide a comprehensive assessment for your child.
Cardiac Care and Williams Syndrome
Dr. Jessica Bowman's expertise in Williams syndrome provides the foundation for the heart care that your child needs. Our clinic collaborates with The Heart Center at Nationwide Children's, including nationally renowned interventional cardiologists and cardiothoracic surgeons. We also have a world-class team of cardiac anesthesiologists that work closely with Dr. Bowman to manage the care of patients undergoing cardiothoracic surgery and other procedures.
Leading the Way to New Treatments and Outcomes Through Clinical Research
Clinical care and research work together. This helps scientists and doctors to find new treatments and therapies. Clinical studies (also called clinical trials) will continue to become more common in daily care at Nationwide Children's. Clinical studies help doctors learn more about conditions and treatment.
Beth Kozel, MD, PhD, is a clinical geneticist and researcher specializing in Williams syndrome.
Williams Syndrome Clinical Research
Help Us Learn More About Williams Syndrome and SVAS
The Williams syndrome (WS) and Supravalvar Aortic Stenosis (SVAS), DNA and Tissue Study is a research study that aims to learn more about genetic differences that contribute to outcomes seen in people with these rare conditions. Questions studied include how the genes work and whether there are other changes in the genome that impact the severity of certain features like cardiovascular disease. Involvement includes contributing a DNA sample and answering online questionnaires. Participants may also choose to donate tissue from a surgery or share their medical records to help investigators learn more about how changes in genes affect the way a person cells work.
Eligible participants include individuals with WS, SVAS, or similar conditions, as well as unaffected family members aged 0-85 years.
Talk to your William’s syndrome clinic team for more information.
Collaborative Registry for Williams Syndrome (CReWS)
The Collaborative Registry for Williams Syndrome (CReWS) is made by and belongs to the Williams Syndrome Association. It collects information about people with Williams syndrome (WS) to help us learn more about the condition and find better treatments.
CReWS gathers and organizes details and medical records of people with WS. It also helps connect families with doctors and scientists who are studying the condition.
Request an Appointment
To request an appointment, we will need an official referral from your primary care doctor or referring physician faxed to either (614) 722-4000 or (614) 938-8555.
A Referral Was Sent: Now What?
We will send a clinic intake form, complete a brief questionnaire, collect demographic information and answer any initial questions about clinic during the intake call and will ask insurance information. We will then contact the clinic nurse, who will schedule the appointment.
Webinar: Understanding the Science, Supporting Better Rest
Sleep plays a critical role in every aspect of health — especially for individuals with Williams Syndrome. But for many families, restful nights can be elusive. Join us for an empowering and informative session on the medical, behavioral, and developmental aspects of sleep, featuring expert panelists from developmental pediatrics, psychology, sleep medicine, and current WS research
What You’ll Learn:
- Why sleep challenges are common in Williams Syndrome
- Medical conditions that can disrupt sleep (like apnea and restless legs)
- How anxiety, sensory sensitivity, and routine play a role
- Practical behavioral strategies for better sleep
- What current research tells us — and what we still need to learn
Meet the Panelists:
- Dr. Elizabeth Barnhardt – Developmental & Behavioral Pediatrician at Nationwide Children’s Hospital
- Dr. Rebecca Lyren – Pediatric Psychologist at Nationwide Children’s Hospital
- Dr. Beth Kozel – Medical Geneticist & WS Researcher at Nationwide Children’s Hospital
- Dr. David Drees – Pediatric Sleep Medicine Specialist at Akron Children’s Hospital
Moderated by the WSA Team, with live Q&A!
Resources For Families
Whether you are local or traveling to Columbus for care, Nationwide Children's is here to help.
- Ronald McDonald House: Conveniently located right on our main campus, just steps away from the hospital, the Ronald McDonald House allows you to remain a part of your child’s care team while providing you a home away from home.
- A national and international destination: We’ve treated hundreds of patients from across the United States and around the world. Whether you are traveling from outside the United States or from another state, our Global Patient Services team can help make your trip as seamless as possible.
- Tips for overnight and extended stays: We've gathered information to help you plan your stay from arrival to going home.
Additional Resources
Testimonials
"The Williams Syndrome Clinic at Nationwide Children's hospital is amazing for my family. The clinic is a great resource to us. The people at the clinic are caring and kind and always there for whatever we need. It is a place that my daughter feels safe and understood. We couldn't ask for a better support system. Thank you."
"The Williams Syndrome Clinic at Nationwide Children’s provides an invaluable resource to us as the parents of an eight year old daughter with Williams Syndrome. While our daughter receives various private therapies and sees her pediatrician on a regular basis, having a team of professionals at Nationwide Children’s to rely upon who have a wealth of experience in dealing with the many complexities of Williams Syndrome has been tremendously helpful. We always come away from our visits to the Clinic with information that is beneficial to the continued well-being and development of our daughter."
"My son was seen at the Nationwide Children's Hospital Williams Syndrome clinic several years ago. The experience was a very positive one--thank you!"