Testing Related Links

Understanding Gene Testing, by US Dept. of Health and Human Services:
www.accessexcellence.org/AE/AEPC/NIH/index.html

GeneSpeak, a publication about genetically inherited cancers:
dserve.swmed.edu/GeneSpeak.html

Chromosomal Mutation Terminology:
wsrv.clas.virginia.edu/%7Erjh9u/chromuts.html

Pictures of chromosomes and chromosome abnormalities, U of Washington:
www.pathology.washington.edu:80/Cytogallery/

Genes involved in cancer, U of Virginia:
wsrv.clas.virginia.edu/%7Erjh9u/cancgene.html

Office of Genetics and Disease Prevention (Center for Disease Control & Prevention):
www.cdc.gov/genetics/

Genetic privacy article:
www.csu.edu.au/learning/ncgr/gpi/odyssey/privacy/index.htm

Task Force on Genetic Testing:
www.med.jhu.edu/tfgtelsi/

Gene Tests--directory of medical genetics testing laboratories:
healthlinks.washington.edu/helix/

Council of Regional Networks for Genetic Services:
www.cc.emory.edu/PEDIATRICS/corn/

Tokyo Medical University
http://www.tokyo-med.ac.jp/genet/index-e.htm

Counseling Related Links

Explains genetic counseling in detail:
www.gene.com/ae/AE/AEC/CC/counseling_background.html

Two classroom activites in ethical questions of genetic testing and counseling:
www.gene.com/ae/AE/AEC/CC/counseling_activities.html

National Society of Genetic Counselors’ Code of Ethics:
members.aol.com/nsgcweb/ethics.htm

Genetic counseling resources--links:
www.nsgc.org/Resource_link.html

Inherited Disease Related Links

Alcoholism

National Council on Alcoholism and Drug Dependency
www.ncadd.org/

Alcoholics Anonymous
www.alcoholics-anonymous.org/

Alzheimer’s

Alzheimer’s Association
www.alz.org/

Alzheimer’s’ Disease Education and Referral Center
www.alzheimers.org/

Alzheimer’s Disease Education and Referral Center
www.biostat.wustl.edu/alzheimer/

Cancer

Colon Cancer Information Center
www.meds.com/mol/colon/index.html

Hereditary Colon Cancer Newsletter
www.mdacc.tmc.edu/~hcc/

American Cancer Society
www.cancer.org/

National Cancer Institute Hereditary Cancer Information
cancernet.nci.nih.gov/p_genetics.html

Cancer Risk Assessment and Counseling
www.dnai.com/~ptkelly/
www.wnet.org/innovation/news/html/cancerg.html

Cystic Fibrosis

Cystic Fibrosis Foundation
www.cff.org/

Cystic Fibrosis Research, Inc.
www.cfri.org/

Cystic Fibrosis News and Resources
www.esiason.org/

Hemochromatosis

Hemochromatosis Society
americanhs.org

Hemochromatosis Society in England
www.trackint.com/ghsoc

Huntington’s Disease

Huntington’s Disease Society of America
www.hdsa.org

Huntington’s Disease information
www.hdfoundation.org/

Muscular Dystrophy

Muscular Dystrophy Association
www.mdausa.org/

Werner’s Syndrome

Disease information
www.stepstn.com/nord/rdb_sum/135.htm

International Registry of Werner’s Syndrome
www.stepstn.com/nord/org_sum/1546.htm

Turner’s Syndrome

Turner’s Syndrome Society of US
www.turner-syndrome-us.org/

Down Syndrome

Down Syndrome World Wide Web Page
www.nas.com/downsyn/

National Association for Down Syndrome
www..org/

National Down Syndrome Society
www.ndss.org/

Hemophilia

World Federation of Hemophilia
www.wfh.org/

Sickle Cell Anemia

Parent’s Guide to Sickle Cell Disease
wellweb.com/INDEX/QSICKLE.HTM

World Wide Resources and links for Sickle Cell
www.emory.edu/PEDS/SICKLE/serv03.htm

General Links

Center for Inherited Disease Research:
www.cidr.jhmi.edu/

Alliance of Genetic Support Groups:
medhelp.org/geneticalliance/

Directory of National Genetic Support Groups:
medhlp.netusa.net/agsg/agsgsup.htm

Rare Genetic Diseases in Children:
mcrcr2.med.nyu.edu/murphp01/lysosome/hgd.htm

International Genetic Epidemiology Society:
darwin.cwru.edu/iges.html

Office of Rare Diseases; gentics information, counseling, services links:
rarediseases.info.nih.gov/ord/genetics-info.html

Office of Rare Diseases:
rarediseases.info.nih.gov/ord/index.html

Coping with the impact of Genetic Disease, from Swedish Hopital in Seattle, WA:
www.accessexcellence.org/AE/AEC/CC/counseling_background.html