Prader-Willi syndrome
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Prader-Willi syndrome (PWS) is a complex genetic condition that affects many parts of the body.[1] At birth, babies with PWS have poor muscle tone and a weak cry. Initially they are slow feeders and appear undernourished. The feeding problems improve after infancy and often 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 less-than-average adult height. There are several known genetic mechanisms that can cause Prader-Willi syndrome; all of the mechanisms cause missing or non-working genes on chromosome 15. Most cases are not inherited, but occur randomly.[2][3]
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- More Detailed Information (Found: 7 Resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates
- General
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The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) provides information related to the health of children, adults, and families. Click on the link to view information on this topic.
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Genetics Home Reference (GHR) contains a condition summary on Prader-Willi syndrome. Click on the link to go to GHR and review this summary.
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MedlinePlus, a Web site designed by the National Library of Medicine Web site to help you research your health questions, provides more information about this topic. Click on the link to view this information.
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The National Center for Biotechnology Information (NCBI) was established in 1988 as a national resource for molecular biology information. Click on the link to view information on this topic.
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The Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Prader-Willi syndrome. Click on the link to go to OMIM and review these resources.
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PubMed is a searchable database of medical literature and lists journal articles that discuss Prader-Willi syndrome. Click on the link to view a sample search on this topic.
- Management Guidelines
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GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions. Click on the link to view the article on this topic.
- Support Groups (Found: 5 Resources)
Groups providing a wide range of services, supportive resources, and information
- Umbrella Organizations
- Disease-Specific Organizations
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Prader-Willi Syndrome Association
8588 Potter Park Drive
Suite 500
Sarasota, FL 34238
Phone: 1-800-926-4797
Email: national @pwsausa.org
Web: http://www.pwsausa.org/
- Live Chat
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The National Organization of Rare Disorders (NORD) has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community. This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more.
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RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.
- Clinical Trials & Research (Found: 1 Resource)
Resources where you may find research studies and clinical trials
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ClinicalTrials.gov lists trials that are studying or have studied Prader-Willi syndrome. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- Services (Found: 1 Resource)
Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories
- Genetic Services
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We recommend that you discuss this information and your concerns with a genetics professional. The following online resources can help you find a genetics professional in your community:
* GeneClinics - A searchable directory of US and international genetics and prenatal diagnosis clinics. To locate genetics clinics in the United States, go to the following link and click on 'Clinic Directory' to find a genetic service close to you.
* ResourceLink - A database of genetics counseling services, searchable by location, name, institution, type of practice, or specialty. Hosted by the National Society of Genetic Counselors.
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The NLM Gateway allows users to search across multiple resources offered on the National Library of Medicine's Web site. Some of these resources may be duplicated in the list of links above. Click on the link to go to the NLM Gateway, and search by condition name.