Online Health Resources

General Health Information
Learning About Genetics and Genetic Disorders
Genetic Testing and Counseling
Clinical Research and Trials
Resources for Specific Disorders

General Health Information

• National Institutes of Health (NIH) Health Information Resources
  A comprehensive guide to health information, including National Institutes of Health (NIH) programs and resources, as well as information on clinical trials, drugs and health conditions.
• Combined Health Information Database (CHID Online)
  A searchable bibliographic database of health information, developed by U.S. government agencies.

Learning About Genetics and Genetic Disorders

• Understanding Gene Testing
  Explanations of the role genes play in disease. Hosted by Access Excellence Resource Center.
• Genome Gateway
  Comprehensive Web resource on genetic information. Hosted by Nature Publishing Company.
• The Human Genome
  Comprehensive one-stop genomic information center. Hosted by the National Center for Biotechnology Information (NCBI) of the National Library of Medicine (NLM).
• Genetics and Disease Prevention Information
  Resources on genetics including journals, reports and fact sheets. Also includes online multimedia presentations ranging from basic genetics to latest research. Hosted by the Centers for Disease Control (CDC).

Genetic Testing and Counseling

• What Can the New Gene Tests Tell Us?
  A clearly written overview of genetic testing. Discusses the tests for Huntington's disease, cystic fibrosis, Alzheimer's disease, and breast cancer. Hosted by the Department of Energy's Oak Ridge National Laboratory (ORNL), a partner with the National Human Genome Research Institute (NHGRI) in the Human Genome Project (HGP).
• Gene Tests/Gene Clinics
  Comprehensive information on genetic testing and genetic counseling. Includes Educational Materials:
  • What is Genetic Testing?
  • Who Should Have A Genetics Consultation?
  • What is a Genetics Consultation?
  • Users must register before accessing this information.
• Fact Sheets, Prenatal Screening
  Detailed explanations of amniocentesis and chorionic villi sampling (CVS). Scroll down page to Prenatal section. Hosted by the March of Dimes.
• A Question of Genes: Inherited Risk
  Information on genetic testing and genetic counseling created to accompany a PBS television documentary. Includes:
  • The Basics About Genetic Testing
  • Interview With A Genetic Counselor
• Mountain States Genetic Network (MoST GeNe)
  Information on genetic counseling, including:
  • Indications For Genetic Counseling Referrals.
  • What to Expect from a Genetics Consultation.
• Medicine and the New Genetics: Gene Testing, Pharmacogenomics and Gene Therapy.
  Current developments in gene testing, drug research and gene therapy. Hosted by Oak Ridge National Laboratory.
• Locating Genetic Counseling/Testing Services: ResourceLink
  A searchable database of genetics counseling services. Search by location, name, institution, type of practice or specialty. Hosted by the National Society of Genetic Counselors.
• Genetic Centers, Clinics and Departments
  Comprehensive resource list for genetic counseling, with links to genetic centers and clinics, associations and university genetics departments. Hosted by the University of Kansas Medical Center.
• Clinic Directory
  Database of genetics clinics, searchable by location, population served and specialty.
  Users must register once at: http://www.geneclinics.org before accessing information. Hosted by GeneTests/GeneClinics.

Clinical Research and Trials

• Understanding Clinical Trials
  Comprehensive information about participating in clinical trials, including how they work, what patients should know, benefits and risks, and how are volunteers protected. Hosted by National Institutes of Health's ClinicalTrials.gov.
• Clinicaltrials.gov
  A comprehensive database of about 5,700 current clinical studies, sponsored by the federal government and the pharmaceutical industry. Search by disease, treatment, sponsor or keyword. Hosted by NIH/National Libraries of Medicine.
• Search the Studies at NIH
  Database of clinical studies being conducted at the NIH Clinical Center (Bethesda, MD). Search by diagnosis, sign, symptom or key words or phrases.
• Cancer.gov
  Search PDQ (Physicians Data Query) database of more than 1,800 active cancer clinical trials. You may perform a broad search - for example, breast cancer - or narrow your search by specifying other criteria such as type of trial and location. Hosted by the National Cancer Institute (NCI).

Resources for Specific Disorders
The following links provide information about a variety of genetic disorders. Scroll down for links arranged alphabetically by specific disorder.

• Genes and Disease
  Information about disorders caused by a single gene. Diseases are categorized by functional disorder (e.g., immune system, nervous system, metabolic disorders). Hosted by National Center for Biotechnology Information (NCBI) of the National Library of Medicine (NLM).
• Genetics and Rare Conditions Site
  Alphabetical index of genetic disorders with links to disease-related associations, support groups, foundations, online discussion groups and listservs. Hosted by the University of Kansas Medical Center.
• Online Genetic Support Group Directory
  Alphabetic index of genetic disorders with links to associations, support groups and disease-related resources. Hosted by the Mountain States Genetic Network (MoSt).
• GeneReviews
  Searchable database of genetic diseases, including detailed description, diagnosis, management, counseling and testing issues. Users must register once at http://www.geneclinics.org before accessing information. Hosted by GeneTests/GeneClinics.
• Online Mendelian Inheritance in Man (OMIM)
  A database cataloguing human genes and genetic disorders. Hosted by the National Center for Biotechnology Information (NCBI) of the National Library of Medicine.
• Medical Genetics
  Information on genetic conditions and birth defects for professionals, educators and individuals, including national and international advocacy and support groups. Comprehensive list of resources organized by disease/condition. Hosted by the University of Kansas Medical Center.
• What is a Jewish Genetic Disease?
  Information on Jewish genetic diseases including screening, testing and counseling. Hosted by Saint Barnabas Health Care System.

Hereditary Breast Cancer

• "Genetic Testing for Breast Cancer Risk: It's Your Choice"
  Questions and answers about testing for BRCA1 and BRCA2 mutations, from the National Cancer Institute (NCI).
• Genetics of Breast and Ovarian Cancer
  Detailed information about risk assessment for hereditary breast cancer and the role BRCA1 and BRCA2 gene mutations play in hereditary breast cancer from the NCI.
• Caution and Counseling Advised with BRCA1 and BRCA2 Testing
  Factors to consider in genetic testing for BRCA 1 and BRCA 2, policy statements of health organizations on testing, and resource list for information on hereditary breast cancer. Hosted by the Pacific Northwest Regional Genetics Group (PacNoRGG)
• Genetic Susceptibility to Breast and Ovarian Cancer: Assessment, Counseling and Testing Guidelines
  Guidelines on testing published by American College of Medical Genetics Foundation. Hosted by the New York State Department of Health.
• Questions and answers about the BRCAX Study
  NHGRI's "Breast Cancer Questions: Not All Genetic Breast Cancers Are Linked to the BRCA1 and BRCA2 Gene," researchers discuss a recent advance in understanding hereditary breast cancer.
• Breast and Ovarian Cancer Genetics
  Comprehensive resource list of online information about breast and ovarian cancer genetics from NOAH (New York Online Access to Health).
• Online Mendelian Inheritance in Man (OMIM): Breast Cancer, Type 1
  Information about BRCA1, Breast Cancer 1, Early-Onset and Breast-Ovarian Cancer from the National Library of Medicine's catalog of human genes and genetic disorders.
• Human Gene Mutation Database 
  Information of practical diagnostic importance to researchers in human molecular genetics; to physicians interested in a particular inherited condition in a given patient or family; and to genetic counselors.
• GeneReviews
  Searchable database of genetic diseases, including breast cancer. Database includes diagnosis, management, counseling and testing issues. Users must register once at http://www.geneclinics.org before accessing the information in GeneReviews.

Colon Cancer

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• Genetics of Colon Cancer
  A clear overview of hereditary colon cancer. Hosted by DNA Sciences.
• Colon and Rectal Cancer Information
  The most recent and accurate cancer information from the National Cancer Institute, including screening, prevention, treatment, and the genetics of colon cancer.
• Colon Cancer Alliance
  Patient support, education, research and advocacy.
• OncoLink
  Searchable library of articles on colon cancer from NCI/CancerLit and the University of Pennsylvania's OncoLink Library. Includes updates on current research from Cancer News. Hosted by the University of Pennsylvania Cancer Center.

Cystic Fibrosis

• Laboratory Standards and Guidelines for Population-based Cystic Fibrosis Carrier Screening
  Recommendations developed by the ACMG (American College of Medical Genetics) and ACOG (American College of Obstetricians and Gynecologists) on screening for cystic fibrosis. These guidelines update those developed by the Cystic Fibrosis Consensus Development Panel. Hosted by ACMG.
• Cystic Fibrosis Carrier Testing: The Decision is Yours
  Information about carrier testing for parents and prenatal testing for fetuses. Hosted by ACOG (American College of Gynecologists).
• Cystic Fibrosis Foundation
  Provides comprehensive information about cystic fibrosis, including information about testing, research, and clinical trials.
• Cystic Fibrosis: Your Genes, Your Health
  Multimedia educational site including screening and treatment information. Hosted by the Dolan DNA Learning Center at Cold Spring Harbor Laboratory.

Hereditary Hemochromatosis

• Disorders: Hemochromatosis
  Overview of hemochromatosis including genetics, risk and testing. Hosted by the Iron Disorders Institute.
• Genetics Fact Sheet: Hemochromatosis (PDF file)
  Discussion of the hereditary aspects of hemochromatosis, including patterns of heredity and risk. Hosted by NSW (New South Wales) Genetics Education Program. Download Adobe Acrobat to read this PDF file.
• Iron Overload and Hemochromatosis FAQs
  Questions and answers about hemochromatosis symptoms, risk, heredity and testing. Hosted by the Centers for Disease Control (CDC).
• Hemochromatosis: Your Genes, Your Health
  Multimedia educational site including screening and treatment information. Hosted by the Dolan DNA Learning Center at Cold Spring Harbor Laboratory.

Huntington's Disease

• Guidelines for Genetic Testing for Huntington's Disease
  Testing guidelines developed by Huntington's Disease Society of America, and an international committee. Hosted by the Huntington's Disease Foundation.
• Huntington's Disease: Hope Through Research
  An overview of Huntington's Disease and genetics. Hosted by the National Institute of Neurological Disorders and Stroke (NINDS).
• Hereditary Disease Foundation Scientists Find Possible Treatment for Huntington's Disease
  Summary of recent research that offers hope of a cure. Hosted by the Huntington's Disease Foundation.
• Huntington's Disease: Your Genes, Your Health
  Multimedia educational site including screening and treatment information. Hosted by the Dolan DNA Learning Center at Cold Spring Harbor Laboratory.

Parkinson's Disease

• Genetics of Parkinson's Disease
  An overview of heredity's role in Parkinson's Disease. Hosted by DNA Sciences.
• Duke Researchers Find Strong Genetic Link for Parkinson's Disease
  Summary of findings of Duke University's recent research (Nov 2001) indicating that heredity plays a role in both early- and late-onset Parkinson's. Hosted by Duke University Medical Center.

Progeria

• Online Mendelian Inheritance in Man: Hutchison-Gilford progeria syndrome
  OMIM reference page from Johns Hopkins University and NCBI.
• The Progeria Research Foundation
  Information, support, news and more from the Progeria Research Foundation.
• Hutchinson-Gilford Progeria Syndrome Resource Center
  News, information, contacts and more from the Resource Center.
• Researchers Discover Progeria Gene
  The NHGRI 2003 press release about the progeria gene discovery.

Prostate Cancer

• Cancer.gov Prostate Cancer Information
  Screening, prevention, and treatment information from the National Cancer Institute
• Prostate Cancer Center
  Includes information and news about prostate cancer and genetics. Hosted by DNA Sciences.

SCID

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• Severe Combined Immunodeficiency (SCID) Foundation
  SCID is a rare, life-threatening immune system disorder that affects only males, but females who carry the gene mutation can pass the disease to their male children.

Sickle Cell Disease

• Sickle Cell Newborn Screening: FAQ's
  Questions and answers about screening infants for sickle cell and treatment for children with sickle cell (scroll to Newborn Screening Information). Hosted by the Sickle Cell Information Center.
• Genes and Disease: Sickle Cell Anemia
  An explanation of the genetics of sickle cell anemia. Hosted by the National Center for Biotechnology Information (NCBI) of the National Library of Medicine.
• Sickle Cell Disease
  Overview of sickle-cell disease including genetics, testing and research. Hosted by WebMD.
• What is Sickle Cell Anemia?
  Overview of sickle-cell disease, including genetics, risk factors, screening and diagnosis. Hosted by MayoClinic.com.
• Sickle Cell Anemia: Your Genes, Your Health
  Multimedia educational site including screening and treatment information. Hosted by the Dolan DNA Learning Center at Cold Spring Harbor Laboratory.

Tay-Sachs Disease

• March of Dimes Fact Sheet on Tay-Sachs
  An overview of Tay-Sachs, including diagnosis, risk, screening and research. Hosted by the March of Dimes.
• Tay-Sachs Disease: Fact Sheet
  An overview of Tay-Sachs, including information on childhood and late-onset Tay-Sachs disease. Hosted by the National Foundation for Jewish Genetic Diseases.
• Tay-Sachs Disease
  Comprehensive information on Tay-Sachs, including risk, genetics and testing. Hosted by the National Tay-Sachs and Allied Diseases Association, Inc.
• Tay-Sachs Disease Information Page
  Q&A on Tay-Sachs. Includes list of organizations that support Tay-Sachs. Hosted by the National Institute of Neurological Disorders and Stroke (NINDS).

Thalassemia

• Thalassemia.com
  A comprehensive site with information on thalassemia, including detailed information about genetics and testing. Hosted by Children's Hospital, Oakland, CA.
• Disorders: Thalassemia
  Overview of Thalssemia disease, including types, risk groups, genetics and treatment. Hosted by the Iron Disorders Institute.
• Thalassemia: Fact Sheet
  Overview of thalassemia disease, including information on prenatal testing and research. Hosted by the March of Dimes.