Genetic Web Sites

National Society of Genetic Counselors

Resource Room, Annual Education Meeting, October 1997

The of the 1997 NSGC Annual Education Committee gratefully acknowledges the work of Ann Garrity Carr, M.S. and Karen Wcislo, M.S. in compiling this list for the Resource Room. It is not meant to be comprehensive but represents a composite from several centers. Web sites are arranged alphabetically by subject heading.  [Some revisions and updates have been made to the page since the meeting, but some links may be old.  A search engine may be helpful in locating the new web site.]

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| Cancer | Cytogenetics | Genetics | Hyperlipidemia | Medical
Neurogenetic | Single Gene Disorders | Support Groups |

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American Society of Clinical Oncology Online
Breast Cancer - National Breast Cancer Coalition (NBCC)
Grassroots advocacy organization of 40,000 individuals from >300 organizations.
Breast Cancer - Government site for consensus conference
Cancerlit (Cancer research updates, abstracts, culled from biomed publications)
Cancer Web - meeting summaries
Cancer Web Report
Cancer Risk Assessment and Counseling Web Site - Patricia Kelly, Ph.D.
CDC's Division of Cancer Prevention and Control, National Center for Chronic Disease Prevention & Health Promotion
Information re: NBCCEDP (national breast & cervical cancer early detection program)
FDA Agency Certified Mammography Facilities
Health Appraisal Tool
Myriad Genetics
National Alliance of Breast Cancer Organizations (NABCO)
NABCO's home page - Trial News section gives current list and brief summaries of breast cancer trials - for more information. Can click on link to NCI's CancerNet clinical trials page.
NCI's International Cancer Information Center
National Cancer Institute
CANCERLIT. PDQ (Physicians Data Query), fact sheets, on-line publications, journal of the National Cancer Institute (abstracts and news section), hot links. gives information on ongoing clinical trials.
NCI Cancer Genetics Network Grant
Oncolink - University of Pennsylvania
Oncology online
Clinical information and communications to cancer specialists.


Chromosome 18 registry/research group
Cytogenetic Database (University of Wisconsin)
Chromosome Database (SERGG)
Chromosome Deletion Outreach
Web site said to be expanding soon to include introductory information about chromosome disorders, and ask the doctor@ section, etc.
Genetics Study Group (Tokyo) - emphasis on chromosomes
Chromosome Database: Borgaonkar, Trunca


American Association for the Advancement of Science
SCIENCE table of contents
American Board of Medical Genetics Homepage
American College of Medical Genetics - policy statements
American College of Medical Genetics - professional practice guidelines
Bioethics online service (abstracts of bioethics journals, etc.)
Biotechnology law, pharmaceuticals and biotech clientele
Biotechnology Links
Boston University School of Medicine/Center for Human Genetics/DNA Dx Tests
e-mail questions to: amilunsk@bu.ed
Information on lists of direct DNA diagnostic tests available
Canadian Genetic Diseases Network
Clinical Dysmorphology
Clinical Dysmorphology Discussion Board
Congress of Molecular Medicine
Cord Blood Banking
DNA Learning Center (student allele database)
Ethics and Genetics
The Gene Letter
Newsletter on scientific and societal issues in genetics developed by The Shriver Center from a DOE/ELSI grant regarding emerging medical, ethical, legal, and policy dilemmas.
Genetics and Your Practice (primary care provider educational materials)
(Includes slides/overheads/outlines)
Genetics Education Center
Genetics education center home page designed by Debra Collins. If you have only one genetics bookmark, this should be the one. There are connections to support groups, meetings, cytogenetics references, videos and practically anywhere else you want to go!
Genetics education sourcebook
Genetics/Ethics - Shriver Center, Genetalk, Geneletter chat group
Genetics Membership Directory
Online version of directory (updated quarterly) for ASHG, GSA, ACMG, and ABGC. Visit home page at address listed, click on organization, then click on Search Membership Directory.
Genetics in Practice (Publication on-line)
Genetics Professional's Home Page
Genetics professionals home page, also designed by Debra Collins
Genetic Professional Societies: addresses & resources
Genscope software project for biology teachers
New phone, fax and e-mail address: ph# (206)527-5742, fax# (206)527-5743, e-mail: Internet Helix is restricted to health care professionals. Each Person who uses it must obtain their own passwords, which will be charged periodically and sent to your current e-mail address. Also A What's New@ section of Internet Helix will alert you to password changes. To access Helix you need a user name@ and a password@ which are the same for all users and will be changed periodically. A User ID#@ will be specific to you. To Obtain Passwords, send a 1 line message (your name), request Helix passwords@ to e-mail address: . Originate message from your own e-mail account so that they will have correct address to send access code updates in the future. Be sure to include your name in the message. They will respond back by e-mail within a few days. They have established links to Genline (, currently under development at University of Washington to relate genetic testing information to diagnosis, management, and counseling issues.
Human Gene Map
Gene map coordinated by National Library of Medicine's National center for Biotechnology Information. Extensive links to supporting data about chemical structure of the genes and the proteins they encode, as well as to online references in the scientific literature that can help researchers link information about a likely disease gene to its role in cell function.
Human Gene Mutation database (search engine for OMIM and GDB)
Human Genome Project
Human Molecular Genetics Mail List and Forum (HUM-MOLGEN)
Human Molecular Genetics Online (Abstracts)
Individual alphabetical sites (Has graphics-R click on graphic-save)
Institute for Genomic Research
Institute for Medical Genetics
Lawrence Berkeley National Laboratory
Merck Manual Information on Genetic Counseling
National Human Genome Research Institute (NHGRI) - ELSI web page
 Facts sheets on NHGRI, ELSI, genetic mapping and other topics.
National Society of Genetic Counselors
OMIM (Online Mendelian Inheritance in Man)
Pedinfo: A Pediatrics WebServer (University of Alabama)
Pedlynx Database of Pediatric Conditions (summaries from various texts)
PSRGN Website
Public Policy and Genetics
The Gene Letter, an electronic newsletter established 7/1/96, developed by the Shriver Center from a 2 year grant from DOE/ELSI about genetics and public policy. Appears every other month in 1st year with news updates as appropriate. Columns include: health, science, ethics, law, society, international developments, book reviews, student corner, in the news, events, conferences, & list of Gene resources.
A Question of Genes: Inherited Risks - PBS special
Rare Genetic Diseases in Children Page
Science Magazine American Association for the Advancement of Science
Systematic Biology
Tree of life


American College of Cardiology
American Heart Association (categories for patients and health professionals)
Angina and Coronary Artery Disease
Berkeley HeartLab E-mail:
Body Mass Index Calculator
Cholesterol, Genetics, and Heart Disease Institute
Current Opinion in Lipidology (Abstracts, fee for full text)
Healthfinder (US Govt. site for consumers) - heart disease/stroke section
Heart Information Navigation (For consumers)
International Abstracts in Cardiology
Journal of Cardiovascular Risk (Abstracts, fee for full text)
Nutrition Analysis Tool
NutriBase Nutrition Database (searchable database of 20,000 food items)

MEDICAL Updated 10/17/97
(general medical issues)

Agency for Health Care Policy and Research (AHCPR)
18 clinical practice guidelines
American Academy of Family Physicians
Has search engine called the cybrarian providing detailed information about any medical condition you ask about.
American Association for the Advancement of Science
SCIENCE table of contents
American Medical Association
Home page that provides access to JAMA and other journals. See also JAMA.
Biotechnology Information Institute
Canadian Institute of Biotechnology
Center for Healthcare Ethics
Centers for Disease Control and Prevention
Division of Cancer Prevention and Control, National Center for Chronic Disease Prevention & Health Promotion.
Clinical Drug Investigation
Columbia Health Care Website
Department of Health and Human Services
Useful section for patients with links to information on a wide range of topics, and site serves as a gateway to suborganizations such as Agency for Health Care Policy and Research.
Dermatology Online Atlas
Extensive dermatology atlas online from Erlangen, Germany
Diseases/Disorders - Alphabetical List (Karolinska Institute) (Feb. 97)
Drugs and Therapy Perspectives
Food and Drug Administration
Agency Certified Mammography Facilities:
HealthClinicUSA at DSHI
(Database of disease briefs. Sx, dx steps, tmts)
Healthfinder - consumer help
New government health information site sponsored by the US Dept of Health and Human Services. It contains links to 500 online documents and 550 WWW sites including >200 government sites and 350 state, local, nonprofit and other information sources, including a number about cancer.
Health Information Management Society
Site for medical computing and communications.
Health Insurance Portability and Accountability Act (Kennedy-Kassebaum)
Summary of the bill:
Healthlink at Stanford
HealthCalc Health Risk Calculator at E2 Consulting
(Users input blood pressure, cholesterol, physical activity. Get analysis of potential health risks.)
Hippocrates (nutrition, research, prevention, fitness, patient communication)
(targeted to primary care practitioners)
Hospital Web
Links to hospital home pages worldwide
Housecall Medical Resources, Inc.
Human Genetics Project, Marshfield Clinic, Wisconsin
Internet Self-Assessment in Pharmacology
(Self-study guide with lecture outlines, reviews of drugs, etc.: sign in as guest)
Table of contents for the Journal of the American Medical Association
AMA web site providing more information about Net and Web protocols and other behind-the-scenes technology
Netsight column from JAMA. Provides extensive dictionary of net terms and educational links for all levels
The Lancet
Law and the Physician: A Practical Guide (textbook)
Managed Care discussion group
Medical/Health Sciences Libraries on the Web
Site links to many Medical and Health sciences libraries grouped by states.
Medical Matrix (clinical medicine database)
Medical and Pharmaceuticals Industry News at Yahoo
This year the National Library of Medicine introduced Internet Grateful Med on the WWW. There is a fee for using the databases, based on the specifics of the search and of the # of items downloaded. A separate NLM database called SDILINE lists only citations from most recent complete month in MEDLINE. See PubMed@ listing for free internet access to MEDLINE.
Medscape (Medical Tribune)
Medscape current abstracted articles page
Medical searches
Morbidity and Mortality Weekly Report (CDC)
To receive weekly table of contents and get instructions for downloading articles, send e-mail message to In the body of the message, type subscribe mmwr-toc.
National Center for Education in Maternal and Child Health
Bibliographies of maternal and child health patient education materials in English, Spanish and a variety of other languages
National Library of Medicine
Gateway to a number of database resources including Medline, for which an account and password are required for access.
Relatively new service to search the NLM over the WWW.
Neurological Disorders - NINDS Guide to Health Information about Neurological Disorders
The New England Journal of Medicine
Contains complete text of some features but not the original articles.
Online Medicine - Dr. Tom Linden's Guide to Online Medicine
Pediatric Cardiology and Critical Care
Pediatrics Electronic Pages/American Academy of Pediatrics
Internet extension of the journal, Pediatrics, providing new research articles and special on-line features including: access to 10 new articles each month, preview tables of contents for print and electronic versions of Pediatrics, download and print copies of on-line articles, search current and back issues, and link to Medicine.
PEDINFO: A pediatrics webServer (University of Alabama)
Pedlynx Database of Pediatric Conditions
Summary information from Nelson Textbook of pediatrics, Birth Defects Encyclopedia and journal articles, review articles, and textbooks compiled by Dr. Alan Grady.
Pharmaceutical Information Network
Free MEDLINE access
Rare Diseases Clinical Research Database at NIH
Reviews of medical literature at Helix
RxMed Instructions to patients (handouts on common/uncommon medical conditions)
Today's Pharmaceutical and Healthcare News from PRN News Wire
Travelers information
Treatment findings
Virtual Hospital Home Page
Multimedia textbooks, teaching files, clinical guidelines and assorted publications
The White House
Let Bill and Hillary (or Whoever) know what you think about health care, etc.
World Health Organization
WWW Virtual Library


Family Caregiver Alliance (SF based resource center for brain-impaired adults)
Hereditary Disease Foundation
HD Mailing List
Huntington Disease Home Page
Huntington Disease Information
Neurogenetics Homepage at MGH/Harvard
Neurology at Massachusetts General Hospital
Neuromuscular Disorders -Washington University School of Medicine, St. Louis, MO
Non-Chew Cookbook


Cystic Fibrosis Gene Therapy
Fetal Alcohol Syndrome Textbook
The G6PD Deficiency Homepage (Genetic, clinical, molecular aspects)
National Gaucher Foundation e-mail:
Massachusetts General Hospital Gaucher Web Site
United Kingdom's Gaucher Group
Gene Therapy Trials:
NIH - Dr. Brady
University of Pittsburgh:
Genetic Counseling for Gaucher Disease - Erin Rice, M.S.
Metabolic Diseases
Information and links from the sponsors of the Inborn-Errors Discussion List.
Access restricted to physicians.
Niemann-Pick Disease - the Ara Parseghian Medical Research Foundation e-mail:
Another site for Niemann-Pick information:
Information regarding gene for Niemann-Pick C being found in lab of Dr. Pentchev's lab at NIH:
NIH Consensus Statement on Breast Cancer Screening
NIH Consensus Statement on Genetic Testing for Cystic Fibrosis


Acoustic Neuroma Association
Alliance of Genetic Support Groups
Alzheimer's Association
Amyotrophic Lateral Sclerosis Association
Association for Retarded Citizens
Discussion boards on numerous topics & links to ARC chapters.
CHD Resource - for parents on Congenital Heart Disease
Chicken Soup for the Soul: Families dealing with Disabilities
Chromosome Deletion Outreach
Cleft Palate Support Organization - Wide Smiles
Computer Resources for those with Disabilities: LINC (Learning Independence Through Computers)
Database of telecommunications resources, links to regional vendors and education resources from on-line section of Maryland's Technology Access Center (LINC). Consumer-based resource center to provide those with disabilities the use of computers to increase their independence. Resource for information on assistive technology, adapted computing equipment and special needs software.
Cornelia deLange Syndrome Foundation
Deafness (National Information Center on Deafness (NICD) - Gallaudet University E-mail:
The Council for Disability Rights
Down Syndrome
Down Syndrome Family Empowerment Network
# of Down Syndrome-related links - family centered site.
Upside! Down Syndrome Society
Good starting place for new families. Straightforward organization. Links to newsgroups, mailing lists and web pages.
National Down Syndrome Society
Education, research & advocacy for Down Syndrome.
Re: piracetam and TNI (targeted nutritional intervention):
Links to mailing lists, support organizations, medical information, doctors and product resources. Little People of America's position on genetic testing, bone-lengthening procedures and portrayal of dwarves in the cinema.
Facioscapulohumeral Society, Inc.
(Use FSH for logon and password)
Familial Dysautonomia
Families of Spinal Muscular Atrophy
Family Village (U. Wisc) Resources on Disability (Card Catalog)
Fanconi Anemia Home Page
Fragile X Organization
Gaucher Disease Web Site - National Gaucher Foundation or
Genetic Conditions/ Rare Conditions: Support Groups & Information Page
(D. Collins)
Genetic Syndrome Support Groups and Other WWW Sites (Jeff Shaw) or
Hereditary Disease Foundation
Huntington Disease Society of America
Hygeia - Support network for parents experiencing fetal loss
Little People of America Homepage
Muscular Dystrophy Association
National Ataxia Foundation
National Ataxia-Telangiectasia Children's Project
National Center for Education in Maternal and Child Health
National Center for Youth with Disabilities
National Easter Seals Society
National Institute of Neurologic Disorders and Stroke
National Information Center for Children and Youth with Disabilities (NICHCY)
New site still under construction promising to be an expansive site. Now includes fact sheets in the public domain, NICHCY publications and directory of 800 numbers.
National Institutes of Health
From the home page, choose Current Research Studies@ and put in common key-word searches to identify studies for patients' referral and enrollment.
Clinical Center's Research Study Information:
National Organization on Disabilities
National Parent Network on Disabilities
National Parent to Parent Network
Neurofibromatosis, Inc.
Neuromuscular Home Page
NF2 Review
Our Kids
Our-Kids, for families raising special kids with special needs, includes Health and Disability-Related Web Sites
Includes parents in 19 countries sharing information, resources and support on research, treatment, advocacy issues, daily living concerns and personal triumphs. Has links to many other pages, including NORD and HGP.
Rare Genetic Diseases in Children - Support Resources Directory
Rett Syndrome or e-mail:  
Information from International Rett Syndrome Association
Sibling Issues: Sibling Support Project
List of sibling support groups in US and Canada. Sibnet listserv mailing list for sibs of all ages of disabled persons.
Spina Bifida
Global resources, organizations, mailing lists.
Special Needs Children: Internet Resources for Special Children (IRSC)
Alphabetical table of contents covering a wide range of disabilities from ADD to visual impairments.
SOFT Home pages (support for Trisomy 13/18)
National Tay Sachs & Allied Diseases (NTSAD)
Major revision of NTSAD website in Summer 97 with extensive resources and information for families affected by more than 40 allied diseases@ including detailed information on Tay-Sachs, Late onset Tay-Sachs, Sandhoff disease, Fabry disease, Gaucher disease, Niemann-Pick and Canavan.
Information on location of Tay-Sachs testing centers worldwide.
other Tay Sachs sites:
Tuberous Sclerosis - NTSA e-mail:
Turner's Syndrome
Turner's Syndrome Society of US
Understanding Gene Testing Booklet from the NIH
Von Hippel Lindau Family Alliance
Your Child's Health Columns (MD authorized disease briefs for parents)

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