Jarcho-Levin syndrome
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Jarcho-Levin syndrome is a genetic skeletal dysplasia affecting the spinal column and ribs. Infants with Jarcho-Levin syndrome have short necks, limited neck motion, often experience respiratory insufficiency, and are prone to repeated respiratory infections that can become life-threatening. In Jarcho-Levin syndrome the vertebrae are fused and the ribs fail to develop properly; as a result the chest cavity has difficulty accommodating the growing lungs.[1]
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- More 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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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 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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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 Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Jarcho-Levin syndrome. Click on the link to go to OMIM and review these resources.
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PubMed lists journal articles that discuss Jarcho-Levin syndrome. Click on the link to go to PubMed and review citations to these articles.
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The Fetus.net has an information page on Jarcho-Levin syndrome. Click on The Fetus.net to view the page.
- Selected Full-Text Journal Articles
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Kulkarni ML, Navaz SR, Vani HN, Manjunath KS, Matani D. Jarcho-Levin syndrome. Indian J Pediatr 2006;73:245-247.
- Support Groups (Found: 8 Resources)
Groups providing a wide range of services, supportive resources, and information
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The MAGIC Foundation
6645 West North Avenue
Oak Park, IL 60302
Toll-Free: 800-362-4423
Phone: 708-383-0808
Fax: 708-383-0899
E-mail: mary@magicfoundation.org
Web site: http://magicfoundation.org
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Restricted Growth Association
P.O. Box 4744
Dorchester
Dorset, Intl DT2 9FA
United Kingdom
Tel: 01308 898445
Fax: 01308 898445
Internet: http://www.restrictedgrowth.co.uk
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European Skeletal Dysplasia Network
North West Genetics Knowledge Park (Nowgen)
The Nowgen Centre 29 Grafton Street
Manchester M13 9WU
United Kingdom
Phone: 0161 276 3202
Fax: 0161 276 4058
Email: info@esdn.org
Web site: www.esdn.org
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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/
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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: 3 Resources)
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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.