Genetics Web Resources
www.geneclinics.org
GeneTests
Of all the sites listed here, this is the best one for easy access to
information and resources; it has clinical reviews and a geographical listing of
laboratories and clinical genetic resources
www.bumc.bu.edu/hg
Boston University Center for Human Genetics
A resource for clinical consultation and molecular and chromosome testing
www.kumc.edu/gec/
University of Kansas Medical Center Genetics Education Center
Provides links to Web sites pertaining to genetics
www.cdc.gov/ncbddd/bd/default.htm
CDC National Center on Birth Defects and Developmental Disabilities
Provides information on birth defects research and surveillance
www.nchpeg.org/
National Coalition for Health Professional Education in Genetics
www.ncbi.nlm.nih.gov/entrez/query. fcgi?db=OMIM
Online Mendelian Inheritance in Man
One of the best sources of information on specific genetic diseases and
syndromes
www.aap.org/visit/cmte18.htm
The American Academy of Pediatrics Committee on Genetics
Includes policy statements on genetics and related issues and excellent links
For parents
www.eparent.com
Exceptional Parent Magazine
201-634-6550
The Web site of this magazine describes it as having "33 award-winning years of
providing information, support, ideas, encouragement and outreach for parents
and families of children with disabilities and the professionals who work with
them."
www.familyvillage.wisc.edu/index.htmlx
Family Village
Described on the Web site as "a global community that integrates information,
resources, and communication opportunities on the Internet for persons with
cognitive and other disabilities, for their families, and for those that provide
them services and support."
www.geneticalliance.org
Genetic Alliance
800-336-GENE
Described on the Web site as an international coalition comprising millions of
people with a genetic condition and more than 600 advocacy, research, and
health-care organizations that represent their interests.
www.netnet.net/mums
Mothers United for Moral Support
877-336-5333 (parents only, please)
Described on the Web site as "a national parent-to-parent organization for
parents or care providers of a child with any disability, rare or not so rare
disorder, chromosomal abnormality or health condition."
www.rarediseases.org
National Organization for Rare Diseases
800-999-6673
Described on the Web site as "a unique federation of voluntary health
organizations dedicated to helping people with rare 'orphan' diseases and
assisting the organizations that serve them. NORD is committed to the
identification, treatment, and cure of rare disorders through programs of
education, advocacy, research, and service."