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Prader-Willi Syndrome

Prader-Willi Syndrome is a complex genetic disorder that affects many parts of your child’s body for his or her lifetime. Children and adults with this condition are can be small in stature with reduced muscle tone. They are at high risk of being obese if they do not receive treatment. They also have developmental and mental disabilities.

After experiencing feeding and developmental delays early in life, children with Prader-Willi usually begin walking and talking by age 2. They also develop voracious appetites and an uncontrollable urge to eat between ages 2 and 4.

Most children are diagnosed within one or two months of birth; others may take months or years to be identified. According to the U.S. National Library of Medicine, Prader-Willi Syndrome affects one in 10,000 to one in 30,000 people worldwide.

People with Prader-Willi Syndrome are missing the genetic material from their father’s part of chromosome 15. Some may have two copies of their mother’s chromosome 15.

We have a long history of coordinating care for children with Prader-Willi Syndrome. Our affiliation with Riley Hospital for Children at Indiana University Health and the Indiana University Department of Medical and Molecular Genetics gives us access to the many resources and specialists your child needs to live a healthy life. Our program began in the 1980s. Some of the research that led to the discovery of the genetic cause of Prader-Willi Syndrome took place at the IU School of Medicine Cytogenetics Laboratories.

A treatment program for your child with Prader-Willi Syndrome often starts with genetic counseling in a clinic operated by the Indiana University Division of Clinical and Biochemical Genetics. A genetics counselor explains to you what children with Prader-Willi Syndrome are like, problems they encounter as they grow up and what to expect in adulthood. Your child is likely to need services from dietitians, pulmonologists, endocrinologists, occupational and speech therapists, psychiatrists and social workers. We connect you with all of these professionals.

Even in adulthood, individuals with Prader-Willi Syndrome need some degree of supervision 24 hours a day. They cannot live on their own. This is because their brains do not work properly. Children and adults with Prader-Willi Syndrome lack the mechanism to control their eating. If left alone, they eat non-stop.

How We Can Help

How We Can Help

Prader-Willi Syndrome Treatment Information

IU Health Medical Genetics physicians and support staff collaborate on a multidisciplinary program that includes nutritional monitoring, physical and hormone therapies, behavior modification and other treatments to help you improve your child’s quality of life.

Prader-Willi Syndrome Locations & Physicians

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Prader-Willi Syndrome Support Services

Learn more about Prader-Willi Syndrome treatments at these websites: