Russell-Silver syndrome
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Russell-Silver syndrome is a disorder present at birth that involves poor growth, low birth weight, short height, and differences in the size of the two sides of the body.[1] The genetic causes of this syndrome are complex. The disorder often results from the abnormal regulation of certain genes that control growth. Research has focused on genes located in particular regions of chromosome 7 and chromosome 11. Most cases of the syndrome are not inherited from an affected parent, but occur sporadically (i.e., by chance).[2]
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- More Information (Found: 10 Resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates
- General
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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 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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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 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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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 Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Russell-Silver syndrome. Click on the link to go to OMIM and review these resources.
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PubMed lists journal articles that discuss Russell-Silver syndrome. Click on the link to go to PubMed and review citations to these articles.
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Genetics Home Reference (GHR) contains a condition summary on Russell-Silver syndrome. Click on the link to go to GHR and review this summary.
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The MAGIC Foundation for Children's Growth has an information page on Russell-Silver syndrome. Click on MAGIC Foundation for Children's Growth to view the information page.
- 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: 15 Resources)
Groups providing a wide range of services, supportive resources, and information
- Umbrella Organizations
- Disease-Specific Organizations
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Human Growth Foundation
997 Glen Cove Avenue Suite 5
Glen Head NY 11545
Telephone: 800-451-6434
Fax: 516-671-4055
E-mail: hgf1@hgfound.org
Web site: www.hgfound.org
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Little People of America (LPA)
5289 NE Elam Young Parkway Suite F-100
Hillsboro OR 97124
Telephone: 888-LPA-2001 (888-572-2001); 503-846-1562
Fax: 503-846-1590
E-mail: info@lpaonline.org
Web site: www.lpaonline.org
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The MAGIC Foundation
6645 West North Avenue
Oak Park IL 60302
Telephone: 800-362-4423; 708-383-0808
Fax: 708-383-0899
E-mail: info@magicfoundation.org
Web site: www.magicfoundation.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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Silver-Russell Support Group
c/o Child Growth Foundation
2 Mayfield Avenue
Chiswick London
W4 1PW
United Kingdom
Phone: 020 8995 0257; 020 8994 7625
Fax: 020 8995 9075
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- 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.
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RSS-Support yahoo group, an online discussion group for adults with family members or other loved ones with Russell-Silver syndrome.
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RSS-People yahoo group, an online discussion group for children and adults with Russell-Silver syndrome.
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Growth Hormone Deficiency group is an International Rare Disease Support Network (IRDSN) eGroup hosted through yahoo group open for anyone interested in making friends, sharing information and providing support for persons affected by 'Growth Hormone Deficiency.
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MAGIC List is an online group sponsored by MAGIC Foundation and hosted by yahoo group. It exists to support, encourage, and advice on the issues associated with raising children on Growth Hormone Therapy.
- Research & Clinical Trials (Found: 3 Resources)
Resources where you may find research studies and clinical trials
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GeneTests lists laboratories offering research genetic testing for this condition. Research genetic tests may be used to find disease-causing genes, learn how genes work, or aid in the understanding of a genetic disorder. In many cases test results are not shared with the patient or physician. Talk to your health care provider or a genetic professional to learn more about research testing for this condition.
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Orphanet lists clinical trials, research studies, and patient registries enrolling people with this condition. Click on Orphanet to view the list.
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ClinicalTrials.gov lists trials on growth hormone deficiency in general. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- Services (Found: 3 Resources)
Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories
- Testing
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GeneTests lists laboratories offering clinical genetic testing for this condition. Clinical genetic tests are ordered to help diagnose a person or family and to aid in decisions regarding medical care or reproductive issues. Talk to your health care provider or a genetic professional to learn more about your testing options.
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Orphanet lists international laboratories offering diagnostic testing for this condition. Click here and scroll down the page to learn more about the processes of certification, accreditation, and external quality assessment available to these labs. Click on Orphanet to view the list.
- 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.
- 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.