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Diseases

Genetic and Rare Diseases Information Center (GARD)

Russell-Silver syndrome


Other Names for this Disease
  • Silver-Russell syndrome
  • Silver-Russell dwarfism
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Your Question

How can I meet other families with children with Russell-Silver syndrome? My granddaughter was recently diagnosed with this condition. I want to know how I can best support and help her as she grows.

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is Russell-Silver syndrome?

Russell-Silver syndrome (RSS) is a congenital disorder that causes poor growth; low birth weight; short height; and size differences (asymmetry) of parts of the body.[1] Other signs and symptoms may include poor appetite; low blood sugar (hypoglycemia) due to feeding difficulties; a small, triangular face with distinctive facial features; clinodactyly (curved finger); digestive system abnormalities; delayed development; and/or learning disabilities. The genetic causes of RSS are complex and relate to certain genes that control growth. Most cases are not inherited from a parent and occur sporadically. In rare cases, it may be inherited in an autosomal dominant or autosomal recessive manner.[2]
Last updated: 3/3/2016

What are the signs and symptoms of Russell-Silver syndrome?

Signs and symptoms of Russell-Silver syndrome (RSS) can vary and may include:
  • intrauterine growth restriction
  • low birth weight
  • poor growth
  • short stature
  • curving of the pinky finger (clinodactyly)
  • characteristic facial features (wide forehead; small, triangular face; and small, narrow chin)
  • arms and legs of different lengths
  • cafe-au-lait spots (birth marks)
  • delayed bone age
  • gastroesophageal reflux disease
  • kidney problems
  • "stubby" fingers and toes
  • developmental delay
  • learning disabilities[1][3]
Last updated: 3/3/2016

How can I meet other’s with children or grandchildren with Russell-Silver syndrome?

There are a number of advocacy organizations and online discussion forums that make it possible for people with Russell-Silver syndrome, their parents, and grandparents to meet others who have been impacted by this syndrome. We have listed these resources below.

Russell-Silver Syndrome Support
Web site: http://russell-silversupport.org/smf/

RSS-Support yahoo group, an online discussion group for adults with family members or other loved ones with Russell-Silver syndrome. http://health.groups.yahoo.com/group/RSS-Support/

RSS-People yahoo group, an online discussion group for children and adults with Russell-Silver syndrome.
http://groups.yahoo.com/group/RSS-People/

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.
http://health.groups.yahoo.com/group/Growth_Hormone_Deficiency

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.
http://health.groups.yahoo.com/group/MAGIC_list/

In addition the following organizations provide information and support for people with Russell-Silver syndrome and their families.

Silver-Russell Support Group
c/o Child Growth Foundation
2 Mayfield Avenue
Chiswick London
W4 1PW
Phone: 020 8995 0257; 020 8994 7625
Fax: 020 8995 9075

MAGIC Foundation for Children's Growth
6645 W. North Ave.
Oak Park, IL 60302
Toll-free: 800-3-MAGIC 
Phone: 708-383-0808 
Fax: 708-383-0899 
E-mail: mary@magicfoundation.org 
Website: http://www.magicfoundation.org/  
Russell-Silver syndrome page: http://www.magicfoundation.org/www/docs/112/russel_silver_syndrome.html

Human Growth Foundation (HGF)
997 Glen Cove Avenue
Glen Head, N.Y. 11545
Toll-free: 800-451-6434
Fax: 516-671-4055 
E-mail: hgf1@hgfound.org  
Web site: http://hgfound.org/  

Little People's Research Fund, Inc. (LPRF)
616 Old Edmondson Avenue
Catonsville, MD 21228
Toll-free: 800-232-LPRF
Phone: 410-747-1100 
Fax: 410-747-1374
Web site: http://www.lprf.org/ 

Last updated: 3/29/2013

References
Other Names for this Disease
  • Silver-Russell syndrome
  • Silver-Russell dwarfism
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.