Coffin-Siris syndrome
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Coffin-Siris syndrome is a rare genetic disorder. The cause of this syndrome is unknown. The first description of the syndrome was published by Coffin and Siris in 1970; they described three girls with mental retardation, short fifth fingers, and absent nails of the fifth fingers.[1]
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- More Detailed Information (Found: 2 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 Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Coffin-Siris 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 Coffin-Siris syndrome. Click on the link to view a sample search on this topic.
- Support Groups (Found: 6 Resources)
Groups providing a wide range of services, supportive resources, and information
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- Disease-Specific Organizations
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Coffin-Siris Syndrome Support Group
1524 Marshall Street
Antioch, CA 94509
Phone: 925-754-6568
E-mail: jxgarris@aol.com
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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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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.
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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.