Prader-Willi Syndrome Clinic

What is Seattle Children’s Prader-Willi Syndrome Clinic?

The Prader-Willi Syndrome (PWS) Clinic at Seattle Children’s brings together experts in many specialties to care for children and teens with PWS. This genetic disorder affects many parts of the body. One of the main symptoms is overeating because the part of the brain that controls feelings of hunger does not work right. This symptom starts in childhood and continues as an adult.

How will the Prader-Willi Syndrome Clinic help my child?

Seattle Children’s has the only clinic devoted to children and teens with PWS in our region (Washington, Alaska, Montana, Idaho and Oregon). Our team includes national experts in PWS.

There is no cure for PWS, but we treat the many health problems that often affect young people with it. These may include:

  • Obesity
  • Hormone imbalances that can affect growth or sexual development
  • Type 2 diabetes
  • Difficulty controlling emotions
  • Intellectual disability
  • Breathing problems during sleep
  • Ranked in 10 Specialties U.S. News and World Report Best Children's Hospitals BadgeBecause of the wide range of health problems related to PWS, children have the best results when they get multidisciplinary care.

    At our PWS Clinic, your child can see multiple experts in one place. This makes it easier for your child to get all the medical care and other services they need.

    Seattle Children’s is proud to be recognized by U.S. News & World Report as one of the top 10 places in the nation to care for children. Our programs are ranked among the country's best in all 10 specialty areas.

    • Each child is different. We work with you to give your child complete care. Some children need genetic testing. Others may need tests to assess how PWS is affecting their body.
    • We provide treatments to improve your child’s symptoms and quality of life. These might include hormone replacement, dietary advice, behavioral therapy, sleep studies and physical therapy. We make referrals as needed to providers with special training in other departments.
    • We can offer our patients the option to take part in national research studies of new drugs and other new treatments. These are called clinical trials. We help connect families to research studies at Seattle Children’s and other organizations.
    • We treat your whole child, not just their symptoms. Members of our team have special training in their field and in the unique needs of children and teens.
    • Our child life specialists and social workers help your child and family ease tension, express concerns or fears and feel more in control. We also connect you to resources.
    • We work with many children and families from around the Northwest and beyond. Seattle Children’s can help with financial counseling, schooling, housing, transportation, interpreter services and spiritual care. Read about our services for patients and families.

Services We Offer

To meet the varied needs of children and teens with PWS, our team has specialized training in areas such as:

We will identify your child’s medical needs and make referrals as needed to providers in other departments, such as Orthopedics and Ophthalmology. We work closely with the Motility Program, which helps children with problems related to movement of food through the digestive tract

Scheduling an Appointment With the PWS Clinic

  • If you would like a referral to the PWS Clinic, talk to your primary care provider.
  • If you already have a referral, please contact us at 206-987-2640 to schedule an appointment or email us for more information.
  • If you have an appointment, we will send you information about how to prepare for your first clinic visit.
  • Providers, see how to refer a patient.

Who’s on the team?

At Seattle Children’s Prader-Willi Syndrome Clinic, we work together as a team and with you to give your child the best treatment. Our team has expertise in the wide range of specialties your child may need.

Endocrinology and Diabetes

Genetics

Genetic counseling

  • Bri Dingmann, MS, LCGC

Neurodevelopmental

Neurology

Psychiatry and behavioral medicine

Pulmonary and sleep medicine

Nursing and diabetes education

  • Anne Dulong, RN, CDE

Nutrition and diabetes education

  • Cheryl Woods, MS, RDN, CD, CDE

Contact Us

For more information, contact the Endocrinology and Diabetes Program at 206-987-2640. If you would like an appointment, ask your child’s primary care provider to refer you.

We provide care at our main campus in Seattle.

Providers, see how to refer a patient.

Resources

You can find more information and resources on these links to other websites:

Paying for Care

Learn about paying for care at Seattle Children’s, including insurance coverage, billing and financial assistance.