- What is Prader-Willi syndrome (PWS) and what causes it?
- What are the symptoms of Prader-Willi syndrome?
- How is it diagnosed?
- What is the prognosis?
- What is the risk for other family members or future babies?
- What treatments/therapies/medications are recommended or available?
- How will my child and our family be impacted?
- When does PWS occur?
- Why does PWS occur?
- How does the genetic error cause PWS?
- What does human growth hormone do for people with PWS?
- What is "Food Security"?
- Does the overeating with PWS begin at birth?
- Do diet medications work for the appetite problems in PSW?
- What is the Red, Yellow, Green System of weight management?
- What kinds of behavior problems do people with PWS have?
- Does early diagnosis help?
- How do I help my other children deal with having a sister or brother with PWS?
- What does the future hold for people with PWS?
- There is no doubt when, what, and how much the person with PWS will eat;
- There is no hope of receiving any more; and
- There is no disappointment due to false expectations.
National Organization of Rare Disorders (NORD)
Provides advocacy, education, and other services for people affected by rare diseases.
Prader-Willi Syndrome Association (USA)
A strong national organization of families and professionals, PSWA offers a toll-free helpline, a bimonthly newsletter and numerous publications about PWS, an annual family conference and scientific meeting, and chapters throughout the country to provide local family support and advocacy.
Heartland Genetic Services Collaborative
Region 5 of the Genetic Service Collaboratives; provides information for families and providers including listings of local resources.
Prader-Willi Syndrome (Genetics Home Reference)
Excellent, detailed review of condition for patients and families; sponsored by the U.S. National Library of Medicine.
Prader-Willi Syndrome (MedlinePlus)
Information about PWS and links to other reliable sources of information; sponsored by the National Library of Medicine.
Supplemental Security Income Guide for Children with PWS (PWSA)
Information and downloadable documents for preparing a Supplemental Security Income (SSI) form; Prader-Willi Syndrome Association.
Utah Prader-Willi Syndrome Association
Provides families and professionals with a network of support, resources, and information. Promotes awareness of PWS and raises funds that will directly benefit affected individuals in Utah.
Food and Behavior in PWS (Pittsburgh Partnership)
Information for providers and families regarding food security and other aspects of behavior in individuals with PWS.
See all Adult Genetics services providers (2) in our database.
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See all Occupational Therapy, Pediatric services providers (42) in our database.
See all Pediatric Cardiology services providers (3) in our database.
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See all Pediatric Endocrinology services providers (2) in our database.
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See all Pediatric Ophthalmology services providers (8) in our database.
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See all Physical Therapy services providers (62) in our database.
See all Prader-Willi Clinics services providers (1) in our database.
See all Prenatal Genetic Counseling/Diagnosis services providers (1) in our database.
See all Psychiatrist, Child-18 services providers (28) in our database.
See all Psychologist, Child-18 services providers (151) in our database.
See all SSI, Supplemental Security Income services providers (12) in our database.
See all Sleep Studies/Polysomnography services providers (8) in our database.
See all Speech/Language Therapy services providers (80) in our database.
See all Vocational Education services providers (180) in our database.
For other services related to this condition, browse our Services categories or search our database.
Angelman, Rett, and Prader-Willi Syndromes Research Consortium
An integrated group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research in genetic and neurodevelopmental disorders and maintaining a Patient Contact Registry.
Prader-Willi Syndrome Studies (ClinicalTrials.gov)
List of studies related to PWS; a service of the U.S. National Institutes of Health.
|Reviewing Author:||Jennifer Goldman-Luthy, MD, MRP, FAAP - 2/2015|
|Compiled and edited by:||Lynne M Kerr, MD, PhD - 10/2012|
|Content Last Updated:||12/2015|
Prader-Willi syndrome: current understanding of cause and diagnosis.
Am J Med Genet. 1990;35(3):319-32. PubMed abstract
Reviews of current understanding of the major clinical, cytogenetic, and DNA findings. Summarizes from literature clinical manifestations and cytogenetic abnormalities.
The Normal One.
New York: Delta/Random House; 2002. 0-385-33756-6 http://www.penguinrandomhouse.com/books/159688/the-normal-one-by-jeann...
Written by a psychotherapist and "normal" sibling of a child with special needs after many years of experience and research into the impact of children with special needs on typically developing siblings.