Prader-Willi syndrome

Prader-Willi syndrome is a disability associated with a severe eating disorder typically leading to obesity and associated health problems such as diabetes, high blood pressure, and heart problems. The specific features of PWS vary from person to person, but nearly all people with this condition have a voracious appetite over which they have little control. To control their food intake, many people with PWS are placed in specialized treatment centers or state institutions (despite their substantial cognitive abilities) because, at present, there is no known medical or psychological treatment for Prader-Willi syndrome.

Resources:

• Services and Programs
• Printable Resources
• Links and Resources
• StudyFinder
• Media
• Faculty

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Services and Programs

• Arts Program at the Vanderbilt Kennedy Center
  Programs include exhibits by artists with disabilities and activities for people with disabilities to practice and express themselves through art.
• Research Family Partners
  Research Family Partners is a program that helps families connect with Vanderbilt Kennedy Center research studies in which they may be interested in taking part.
• Tennessee Disability Pathfinder - An internet community and statewide helpline
  Phone, web, and print resources in English and Spanish to connect the Tennessee disability community with service providers. Referral services, free of cost, are provided to persons with disabilities, family members, service providers, and advocates.
• Tennessee Kindred Stories of Disability
  Families, friends and service providers share their stories about people living with disability in Tennessee.

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Printable Resources and Materials

• Prader‐Willi Syndrome Tip Sheet
  

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Links and Resources

• Best Buddies (Vanderbilt Chapter)
  Vanderbilt University's Best Buddies chapter.
• Prader-Willi syndrome - Health Library
  A resource of links and information concerning Prader-Willi syndrome.
• The Prader-Willi Syndrome Association
  PWSA (USA) is an organization of families and professionals working together to promote and fund research, provide education, and offer support to enhance the quality of life of those affected by Prader-Willi syndrome.

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StudyFinder - Participate in a study related to Prader-Willi syndrome

Vanderbilt Kennedy Center researchers need subjects to complete the studies listed below.

• Trajectories of Phenotypic behavior in Persons with Prader-Willi Syndrome

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Video, Podcast and Images

• Prader-Willi Syndrome and Serotonin 2C Receptor Editing: Every Dogma Has its Day
  Ronald Emeson, Ph.D., presented at the April 7, 2010 Vanderbilt Kennedy Center Developmental Disabilities Grand Rounds.

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