Prader-Willi syndrome

Common Name(s)

Prader-Willi syndrome

Prader-Willi syndrome (PWS) is a genetic condition that affects many parts of the body. Infants with PWS have low muscle tone, weak cry, feeding difficulties, and slow growth. Between 2 to 4 years of age, children with PWS become very focused on food and have difficulty controlling their appetite. The overeating often results in rapid weight gain and obesity. Individuals with PWS also often have developmental delays and short stature. Common behaviors include stubbornness, temper outburts, and obsessive-compulsive behavior. PWS is caused by missing or non-working genes on chromosome 15. Most cases are not inherited.
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Prader-Willi syndrome" for support, advocacy or research.

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CNS Foundation

CNS Foundation's Mission is Three-fold: - Expedite scientific research to find treatments and cures for the more than 14 million children living with some form of neurological disorder - Provide families and health care professionals with up-to-date information and resources on the latest discoveries in pediatric neurology - Educate the public, and public officials, on the critical importance of funding pediatric neurological disorder research

Last Updated: 12 Oct 2013

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Foundation for Prader-Willi Research

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome (PWS) through the advancement of research.

Last Updated: 4 Mar 2013

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Prader-Willi Syndrome Association (USA)

Prader-Willi Syndrome Association (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.

Last Updated: 13 Dec 2012

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Prader-Willi Syndrome Association-Kansas

The Kansas Chapter of the Prader-Willi Syndrome Association USA is committed to assist each family in locating services, education, advocacy and literature. The Prader-Willi Syndrome Association - Kansas Chapter we’ll give you the attention and personal devotion you require every step of the way to assist in maintaining well being for your child with PWS. Prader-Willi Syndrome Association - Kansas is located in Wichita with a devoted team of parents also with children impacted by PWS. Let us put our experience to work helping you and your child.

Last Updated: 27 Apr 2013

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General Support Organizations

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Prader-Willi syndrome" for support, advocacy or research.

Logo
CNS Foundation

CNS Foundation's Mission is Three-fold: - Expedite scientific research to find treatments and cures for the more than 14 million children living with some form of neurological disorder - Provide families and health care professionals with up-to-date information and resources on the latest discoveries in pediatric neurology - Educate the public, and public officials, on the critical importance of funding pediatric neurological disorder research

http://www.cnsfoundation.org

Last Updated: 12 Oct 2013

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Foundation for Prader-Willi Research

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome (PWS) through the advancement of research.

http://www.fpwr.org

Last Updated: 4 Mar 2013

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Prader-Willi Syndrome Association (USA)

Prader-Willi Syndrome Association (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.

http://www.pwsausa.org

Last Updated: 13 Dec 2012

View Details
Prader-Willi Syndrome Association-Kansas

The Kansas Chapter of the Prader-Willi Syndrome Association USA is committed to assist each family in locating services, education, advocacy and literature. The Prader-Willi Syndrome Association - Kansas Chapter we’ll give you the attention and personal devotion you require every step of the way to assist in maintaining well being for your child with PWS. Prader-Willi Syndrome Association - Kansas is located in Wichita with a devoted team of parents also with children impacted by PWS. Let us put our experience to work helping you and your child.

http://www.pwsa-kansas.org

Last Updated: 27 Apr 2013

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General Support Organizations

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Prader-Willi syndrome" returned 220 free, full-text research articles on human participants. First 3 results:

Manic phenomena in an adult with Prader-Willi syndrome.
 

Author(s): Varda Gross-Tsur, Harry Hirsch, Fortu Benarroch

Journal: Isr. Med. Assoc. J.. 2014 Jan;16(1):66.

 

Last Updated: 28 Feb 2014

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Type II diabetes and impaired glucose tolerance due to severe hyperinsulinism in patients with 1p36 deletion syndrome and a Prader-Willi-like phenotype.
 

Author(s): Stefano Stagi, Elisabetta Lapi, Marilena Pantaleo, Francesco Chiarelli, Salvatore Seminara, Maurizio de Martino

Journal:

 

Deletion of the subtelomeric region of 1p36 is one of the most common subtelomeric deletion syndromes. In monosomy 1p36, the presence of obesity is poorly defined, and glucose metabolism deficiency is rarely reported. However, the presence of a typical Prader-Willi-like phenotype ...

Last Updated: 7 Feb 2014

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Good cognitive performances in a child with Prader-Willi syndrome.
 

Author(s): Rosa Nugnes, Eugenio Zito, Enza Mozzillo, Maria Erminia Camarca, Maria Pia Riccio, Gaetano Terrone, Daniela Melis, Carmela Bravaccio, Adriana Franzese

Journal:

 

We report the case of a child affected by Prader-Willi syndrome (PWS) with good cognitive performances and without relevant behavioral abnormalities.The diagnosis of PWS, suspected on the basis of clinical features and past history, was confirmed by DNA methylation analysis. Additional ...

Last Updated: 17 Jan 2014

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Prader-Willi syndrome" returned 10 free, full-text review articles on human participants. First 3 results:

GrowthHormone Research Society workshop summary: consensus guidelines for recombinant human growth hormone therapy in Prader-Willi syndrome.
 

Author(s): Cheri L Deal, Michèle Tony, Charlotte Höybye, David B Allen, Maïthé Tauber, Jens Sandahl Christiansen,

Journal: J. Clin. Endocrinol. Metab.. 2013 Jun;98(6):E1072-87.

 

Recombinant human GH (rhGH) therapy in Prader-Willi syndrome (PWS) has been used by the medical community and advocated by parental support groups since its approval in the United States in 2000 and in Europe in 2001. Its use in PWS represents a unique therapeutic challenge that includes ...

Last Updated: 3 Jun 2013

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Motor problems in Prader-Willi syndrome: a systematic review on body composition and neuromuscular functioning.
 

Author(s): Linda Reus, Machiel Zwarts, Leo A van Vlimmeren, Michel A Willemsen, Barto J Otten, Maria W G Nijhuis-van der Sanden

Journal: Neurosci Biobehav Rev. 2011 Jan;35(3):956-69.

 

Motor problems in Prader-Willi syndrome (PWS) are presumably related to abnormal body composition and certain neuromuscular abnormalities. The authors reviewed the literature to evaluate the extent to which body composition is affected and gathered all findings on neuromuscular functioning ...

Last Updated: 14 Dec 2010

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[Growth hormone usage in Prader-Willi syndrome].
 

Author(s): Durval Damiani

Journal: Arq Bras Endocrinol Metabol. 2008 Jul;52(5):833-8.

 

Prader-Willi syndrome (PWS), with a prevalence of 60:1.000.000, results from the loss of paternal chromosome 15, being 56% due to deletion, 24% due to uniparental maternal disomy, and 18% from methylation, an epigenetic phenomenon. The clinical picture begins with extreme muscular ...

Last Updated: 17 Sep 2008

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Clinical Trial Information This information is provided by ClinicalTrials.gov

Oxytocin Trial in Prader-Willi Syndrome
 

Status: Not yet recruiting

Condition Summary: Prader Willi Syndrome

 

Last Updated: 3 Apr 2014

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Prader-Willi Syndrome Macronutrient Study
 

Status: Recruiting

Condition Summary: Prader Willi Syndrome; Syndromic Obesity; Childhood Obesity

 

Last Updated: 14 May 2014

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Is There a Sensibility Increased in the Growth Hormone at Child With Prader-Willi Syndrome?
 

Status: Recruiting

Condition Summary: Prader-Willi Syndrome; Growth Hormone Deficiency

 

Last Updated: 30 Apr 2013

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