Proteus syndrome
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Proteus syndrome is a type of overgrowth syndrome. It is characterized by the progressive abnormal growth of body tissues. The cause of the condition is currently unknown. Management of the condition often requires a team of specialists with knowledge of the wide array of manifestations and complications of the disorder.[1]
References
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Biesecker L. The challenges of Proteus syndrome: diagnosis and management. European Journal of Human Genetics. 2006.
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- More Detailed Information (Found: 14 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 American Society for Surgery of the Hand provides information on congenital differences of the hand. Click on American Society for Surgery of the Hand to view the information page.
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The Children’s Hospital Boston has a information page on congenital limb defects. Click on the link above to view this information page.
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The New Zealand Dermatolgical Society's Web site has information on Proteus syndrome. Click on the link above to view this information page.
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eMedicine provides information on this topic. Click on the link to view this information. You may need to register to view the medical textbook, but registration is free
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The Genetic Alliance is an international coalition comprised of more than 600 advocacy, research and health care organizations representing millions of individuals with genetic conditions. Click on the link to view information on this topic.
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MeSH® (Medical Subject Headings) is a terminology tool used by the National Library of Medicine. Click on the link to view information on this topic.
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The National Organization for Rare Disorders (NORD) is a federation of more than 130 nonprofit voluntary health organizations serving people with rare disorders. 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 Proteus syndrome. Click on the link to go to OMIM and review these resources.
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Orphanet is a database dedicated to information on rare diseases and orphan drugs. Access to this database is free of charge. Click on the link to read information on this topic.
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The Proteus Syndrome Foundation Web site provides information on this syndrome. Click on Proteus Syndrome Foundation to view the information page.
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PubMed is a searchable database of medical literature and lists journal articles that discuss Proteus syndrome. Click on the link to view a sample search on this topic.
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TheFetus.net has an information page on Proteus syndrome. Click on the link to view the information page.
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The Genetics Education Center at the University of Kansas Medical Center has a list of Proteus syndrome related terms and definitions. Click on Genetics Education Center to view the list.
- Selected Full-Text Journal Articles
- Support Groups (Found: 11 Resources)
Groups providing a wide range of services, supportive resources, and information
- Umbrella Organizations
- Disease-Specific Organizations
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Proteus Syndrome Foundation, UK
Tracey Whitewood-Neal, Chair
2 Watermill Close
Bexhill-on-Sea
East Sussex
TN39 5EJ
Phone: 01424 736640
E-mail: tracy.whitewood_neal@virgin.net
Web site: http://www.proteus-syndrome.org.uk/
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Proteus Syndrome Foundation
6235 Whetstone Drive
Colorado Springs, CO 80918
Web-mail: http://www.proteus-syndrome.org/html/contact.htm
Website: http://www.proteus-syndrome.org
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Limb Differences
Web site: http://limbdifferences.org/
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Contact a Family is a UK-wide charity providing advice, information and support to individuals affected by various health conditions. They enable parents, families, and individuals to get in contact with others, on a local, national, and international basis. Each year they reach at least 275,000 families. Click on Contact a Family to view the Making Contact page for Proteus syndrome.
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SuperHands
515 NW Saltzman Road #767
Portland, Oregon 97229-6098
Phone: 866-292-1430
Online Web form: http://www.superhands.us/7trg33/contactsh.html
Web site: http://www.superhands.us/
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MUMS National Parent to Parent Network puts parents in touch with other parents who have children with this condition or similar symptoms.
MUMS National Parent to Parent Network
150 Custer Court
Green Bay, Wisconsin 54301-1243
Toll-free: 877-336-5333 (Parents only please)
Telephone: 920-336-5333
Fax: 1-920-339-0995
E-mail: mums@netnet.net
Web site: http://www.netnet.net/mums/
- 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 Proteus 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 - NLM Gateway
A tool to search across multiple resources offered on the National Library of Medicine's Website
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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.