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 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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should never be used for diagnostic or treatment purposes. If you have questions regarding
a medical condition, always seek the advice of your physician or other qualified health
professional. NORD's reports provide a brief overview of rare diseases. For more specific
information, we encourage you to contact your personal physician or the agencies listed as
"Resources" on this report.
Copyright 1984, 1985, 1987, 1988, 1989, 1992, 1994, 1996, 1997, 1998, 1999, 2000, 2002, 2004, 2005, 2009
NORD is grateful to Janalee Heinemann, MSW-Director of Research & Medical Affairs at the Prader-Willi Syndrome Association (USA) for updating this report.
Synonyms of Prader Willi Syndrome
- Cryptorchidism-Dwarfism-Subnormal Mentality
- HHHO
- Hypogenital Dystrophy with Diabetic Tendency
- Hypotonia-Hypomentia-Hypogonadism-Obesity Syndrome
- Labhart-Willi Syndrome
- Prader-Labhart-Willi Fancone Syndrome
- Willi-Prader Syndrome
Disorder Subdivisions
General Discussion
Prader-Willi syndrome (PWS) is a genetic disorder characterized by low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is 70, but even those with normal IQs almost all have learning issues. Social and motor deficits also exist. At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia which can lead to a diagnosis of failure to thrive. The second stage ("thriving too well"), has a typical onset between the ages of two and five, but can be later. The hyperphagia (extreme unsatisfied drive to consume food) lasts throughout the lifetime. Children with PWS have sweet and loving personalities, but this phase is also characterized by increased appetite, weight control issues, and motor development delays along with some behavior problems and unique medical issues.
Organizations related to Prader Willi Syndrome
- Cassidy, Suzanne, M.D.
University of Arizona
Department of Pediatrics
Tucson AZ None
Phone #: --
800 #: --
e-mail: N/A
Home page: N/A
- Erickson, Robert, M.D.
University of Arizona
Department of Pediatrics
1501 North Campbell Ave
Tucson AZ 85724
Phone #: --
800 #: --
e-mail: N/A
Home page: N/A
- Foundation for Prader-Willi Research
104 Hume Avenue
Alexandria VA 22301
Phone #: 703-683-7500
800 #: N/A
e-mail: tthoet@fpwr.org
Home page: www.fpwr.org
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: ordr@od.nih.gov
Home page: http://rarediseases.info.nih.gov/Default.aspx
- International Prader Willi Syndrome Organization (IPWSO)
c/o Baschirotto Institute for Rare Diseases (BIRD)
Via Bartolomeo Bizio, 1
36023 Costozza (VI) None None
Phone #: +39- 04-44 555557
800 #: N/A
e-mail: g.fornas@alice.it
Home page: http://www.ipwso.org
- MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay WI 54301-1243
Phone #: 920-336-5333
800 #: 877-336-5333
e-mail: mums@netnet.net
Home page: http://www.netnet.net/mums/
- Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Phone #: 310-264-0826
800 #: N/A
e-mail: getinfo@madisonsfoundation.org
Home page: http://www.madisonsfoundation.org
- March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains NY 10605
Phone #: 914-997-4488
800 #: 888-663-4637
e-mail: Askus@marchofdimes.com
Home page: http://www.marchofdimes.com
- NIH/National Institute of Child Health and Human Development
31 Center Dr
Building 31, Room 2A32
MSC2425
Bethesda MD 20892
Phone #: 301-496-5133
800 #: --
e-mail: N/A
Home page: http://www.nichd.nih.gov/
- Prader-Willi France
10 Rue Charles Clement
Mondrepuis Intl F02500
Phone #: 33 -323- 98 79 04
800 #: N/A
e-mail: jean-yves.belliard@wanadoo.fr
Home page: http://www.perso.wanadoo.fr/pwillifr
- Prader-Willi Syndrome Association (UK)
125A London Rd
Derby Intl DE1 2QQ
Phone #: 01 -332- 365676
800 #: --
e-mail: admin@pwsa.co.uk
Home page: http://www.pwsa.co.uk
- Prader-Willi Syndrome Association (USA)
8588 Potter Park Drive
Suite 500
Sarasota FL 34238
Phone #: 941-487-6729
800 #: 800-926-4797
e-mail: national@pwsausa.org
Home page: http://www.pwsausa.org
- Sjældne Diagnoser / Rare Disorders Denmark
Frederiksholms Kanal 2, 3rd Floor
Copenhagen K None 1220
Phone #: 45 -33 -14 00 10
800 #: N/A
e-mail: mail@sjaeldnediagnoser
Home page: http://www.raredisorders.dk
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