Toriello-Carey syndrome
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Toriello-Carey syndrome is rare genetic condition which was first described in 1988 by Helga V. Toriello and John C. Carey. Although the signs and symptoms of the syndrome may vary from person to person, the condition is generally characterized by corpus callosum agenesis, unusual facial appearance, Pierre Robin sequence, and other anomalies. Treatment is asymptomatic.[1]
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- More Information (Found: 3 Resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates
- General
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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 Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Toriello-Carey syndrome. Click on the link to go to OMIM and review these resources.
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PubMed lists journal articles that discuss Toriello-Carey syndrome. Click on the link to go to PubMed and review citations to these articles.
- Support Groups (Found: 7 Resources)
Groups providing a wide range of services, supportive resources, and information
- Umbrella Organizations
- Disease-Specific Organizations
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Agenesis of Corpus Callosum (ACC) Network
5749 Merrill Hall
Room 18
University of Maine
Orono, ME 04469-5749
Telephone: 207-581-3119
Fax: 207-581-3120
E-mail: um-acc@maine.maine.edu
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CHASER (Congenital Heart Anomalies -- Support, Education & Resources, Inc.)
2112 North Wilkins Road
Swanton, Ohio 43558
Telephone: 419-825-5575
Fax: 419-825-2880
E-mail: CHASER@compuserve.com
Web site: http://www.csun.edu/~hcmth011/chaser/contact.html
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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.
- Research & Clinical Trials (Found: 1 Resources)
Resources where you may find research studies and clinical trials
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The U.S. National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. There is a study titled Studies of Children with Metabolic or Other Genetic Disorders which may be of interest to you. To find this trial, click on the link above.
- More Search Tools (Found: 1 Resources)
Resources to help you find more information on this topic
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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.