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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CANCER

American Society of Clinical Oncology Online
http://www.asco.org
 
Breast Cancer - National Breast Cancer Coalition (NBCC)
http://www.natlbcc.org
Grassroots advocacy organization of 40,000 individuals from >300 organizations.
 
Breast Cancer - Government site for consensus conference
http://odp.od.nih.gov/consensus/
 
Cancerlit (Cancer research updates, abstracts, culled from biomed publications)
http://infoventures.com/cancer/
 
Cancer Web - meeting summaries
 
Cancer Web Report
http://infoventures.com/cancer/report/c-rpt.html
 
Cancer Risk Assessment and Counseling Web Site - Patricia Kelly, Ph.D.
http://www.dnai.com/~ptkelly/
 
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
http://www.fda.gov/cdrh/faclist.html
 
Health Appraisal Tool
http://www.youfirst.com
 
Myriad Genetics
http://www.myriad.com
 
National Alliance of Breast Cancer Organizations (NABCO)
http://www.nabco.org
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
http://cancernet.nci.nih.gov
 
National Cancer Institute
http://www.nci.nih.gov
CANCERLIT. PDQ (Physicians Data Query), fact sheets, on-line publications, journal of the National Cancer Institute (abstracts and news section), hot links.
http://cancernet.nci.nih.gov/ gives information on ongoing clinical trials.
 
NCI Cancer Genetics Network Grant
http://www.med.nyu.edu/cgi-bin/display_nih_shorttext?19970523.rfa&3
 
Oncolink - University of Pennsylvania
http://www.oncolink.upenn.edu
 
Oncology online
http://205.239.179.160:81/
Clinical information and communications to cancer specialists.

CYTOGENETICS

Chromosome 18 registry/research group
http://chr18.uthscsa.edu
 
Cytogenetic Database (University of Wisconsin)
http://www.Waisman.Wisc.Edu/~rowley/mums/mum_chro.htm
 
Chromosome Database (SERGG)
http://www.ir.miami.edu/genetics/sergg/chromosome.html
 
Chromosome Deletion Outreach
http://members.aol.com/cdousa/cdo.htm
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
http://www.tokyo-med.ac.jp/genet/index-e.htm
 
Chromosome Database: Borgaonkar, Trunca
/gec/prof/cytogene.html

GENETICS RELATED

American Association for the Advancement of Science
http://www.aaas.org/
SCIENCE table of contents
 
American Board of Medical Genetics Homepage
http://www.faseb.org/genetics/abmg/abmgmenu.htm
 
American College of Medical Genetics - policy statements
http://www.faseb.org/genetics/acmg/pol-menu.htm
 
American College of Medical Genetics - professional practice guidelines
 
Bioethics online service (abstracts of bioethics journals, etc.)
http://www.mcw.edu/bioethics
 
Biotechnology law, pharmaceuticals and biotech clientele
http://www2.ari.net/foley/homepage.html
 
Biotechnology Links
http://www.ebi.ac.uk/htbin/bwurld.pl/
 
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
http://www.cgdn.generes.ca
 
Clinical Dysmorphology
 
Clinical Dysmorphology Discussion Board
http://genetics.ich.bpmf.ac.uk/DDB/ddb.html
 
Congress of Molecular Medicine
http://www.cmm.springer.de
 
Cord Blood Banking
http://www.cordbloodinfo.com/
http://www.cordblood.com
 
CORN
http://www.cc.emory.edu/PEDIATRICS/corn/corn.htm
 
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
/gec
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
http://www.netspace.org/MendelWeb
 
Genetics/Ethics - Shriver Center, Genetalk, Geneletter chat group
 
Genetics Membership Directory
http://www.faseb.org/genetics
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)
http://www.pgh.auhs.edu/genetics/
 
Genetics Professional's Home Page
/gec/geneinfo.html
Genetics professionals home page, also designed by Debra Collins
 
Genetic Professional Societies: addresses & resources
/gec/prof/soclist.html
 
Genscope software project for biology teachers
GLaRGG
 
GPGSN
 
Helix
http://www.hslib.washington.edu/helix
New phone, fax and e-mail address: ph# (206)527-5742, fax# (206)527-5743, e-mail: helix@u.washington.edu 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: helix@u.washington.edu . 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 (http://www.geneclinics.org/), currently under development at University of Washington to relate genetic testing information to diagnosis, management, and counseling issues.
 
Human Gene Map
http://www.ncbi.nlm.nih.gov/science96/
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)
http://www.uwcm.ac.uk/uwcm/mg/hgmd0.html
 
Human Genome Project http://www.ornl.gov/TechResources/Human_Genome/home.html
 
Human Molecular Genetics Mail List and Forum (HUM-MOLGEN)
http://www.informatik.uni-rostock.de/HUM-MOLGEN/
 
Human Molecular Genetics Online (Abstracts)
http://www3.oup.co.uk/hmg/
 
Individual alphabetical sites (Has graphics-R click on graphic-save)
http://members.aol.com/dnacutter/sgroup.htm
 
Institute for Genomic Research
http://www.tigr.org/
 
Institute for Medical Genetics
 
Lawrence Berkeley National Laboratory
http://www.lbl.gov
 
Merck Manual Information on Genetic Counseling
http://www.merck.com/
 
MSRGSN
http://www.ahsc.arizona.edu/~msrgsn/msrgsnhp.htm
 
National Human Genome Research Institute (NHGRI) - ELSI web page
http://www.nhgri.nih.gov
 Facts sheets on NHGRI, ELSI, genetic mapping and other topics.
 
National Society of Genetic Counselors
http://members.aol.com/nsgcweb/nsgchome.htm
 
OMIM (Online Mendelian Inheritance in Man)
http://www3.ncbi.nlm.nih.gov/Omim/searchomim.html
 
Pedinfo: A Pediatrics WebServer (University of Alabama)
http://www.uab.edu/pedinfo/DiseasesCongenital.html
 
Pedlynx Database of Pediatric Conditions (summaries from various texts)
 
PSRGN Website
http://www.best.com/~psrgn/
 
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
http://www.pbs.org/gene/
 
Rare Genetic Diseases in Children Page
http://mcrcr2.med.nyu.edu/murphp01/homenew.htm
http://mcrcr2.med.nyu.edu/murphp01/frame.htm
 
Science Magazine
http://www.sciencemag.org/
http://www.aaas.org American Association for the Advancement of Science
 
SERGG
http://www.cc.emory.edu/PEDIATRICS/sergg/sergg.htm
 
Systematic Biology
http://www.utexas.edu/ftp/depts/systbiol/
 
Tree of life
http://phylogeny.arizona.edu/tree/phylogeny.html

HYPERLIPIDEMIA, CAD, etc.

American College of Cardiology
http://www.acc.org/clinical/index.html
 
American Heart Association (categories for patients and health professionals)
 
Angina and Coronary Artery Disease
 
Berkeley HeartLab
http://www.berkeleyheartlab.com/ E-mail: sheila@berkeleyheartlab.com
 
Body Mass Index Calculator
http://uhs.bsd.uchicago.edu/dr-bob/tips/bmi.html
 
Cholesterol, Genetics, and Heart Disease Institute
http://www.heartdisease.org
 
Current Opinion in Lipidology (Abstracts, fee for full text)
 
Healthfinder (US Govt. site for consumers) - heart disease/stroke section
http://www.healthfinder.gov/tours/heart.htm
 
Heart Information Navigation (For consumers)
http://www.heartinfo.org/hrtnews.htm
 
International Abstracts in Cardiology
http://www.bestmdsite.com/abstracts/abstracts-cardiology-home.html
 
Journal of Cardiovascular Risk (Abstracts, fee for full text)
 
Nutrition Analysis Tool
http://www.ag.uiuc.edu/~food-lab/nat/
 
NutriBase Nutrition Database (searchable database of 20,000 food items)
http://www.nutribase.com

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

Agency for Health Care Policy and Research (AHCPR)
http://www.ahcpr.gov/
18 clinical practice guidelines
 
American Academy of Family Physicians http://www.healthy.net/associations/cso/cioi/AAFP.htm
Has search engine called the cybrarian providing detailed information about any medical condition you ask about.
 
American Association for the Advancement of Science
http://www.aaas.org/
SCIENCE table of contents
 
American Medical Association
http://www.ama-assn.org
Home page that provides access to JAMA and other journals. See also JAMA.
 
Biotechnology Information Institute
http://www.bioinfo.com/
 
Canadian Institute of Biotechnology
http://www.biotech.ca
 
Center for Healthcare Ethics
 
Centers for Disease Control and Prevention
http://www.cdc.gov
Division of Cancer Prevention and Control, National Center for Chronic Disease Prevention & Health Promotion.
 
Clinical Drug Investigation
http://www.medscape.com/adis/CDI/public/journal.CDI.html
 
Columbia Health Care Website
http://www.columbia.net
 
Department of Health and Human Services
http://www.os.dhhs.gov
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
http://www.dermis.net/bilddb/index_e.htm
Extensive dermatology atlas online from Erlangen, Germany
 
Diseases/Disorders - Alphabetical List (Karolinska Institute)
http://www.mic.ki.se/Diseases/alphalist.html (Feb. 97)
 
Drugs and Therapy Perspectives
http://www.medscape.com/adis/DTP/public/journal.DTP.html
 
Food and Drug Administration
http://www.fda.gov
Agency Certified Mammography Facilities: http://www.fda.gov/cdrh/faclist.html
 
HealthClinicUSA at DSHI
http://www.familyinternet.com/healthclinicusa/index.pl
(Database of disease briefs. Sx, dx steps, tmts)
 
Healthfinder - consumer help
http://www.healthfinder.gov
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
http://www.himss.org/
Site for medical computing and communications.
 
Health Insurance Portability and Accountability Act (Kennedy-Kassebaum)
Summary of the bill: http://www.os.dhhs.gov/news/press/1996pres/960821.html
Healthlink at Stanford
 
HealthCalc Health Risk Calculator at E2 Consulting
http://www.e2consult.com/assess.htm
(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)
 
HGMIS
http://www.ornl.gov/hgmis/home.html
http://www.ornl.gov/hgmis/publicat/publications.html
http://www.ornl.gov/hgmis/vl.html
 
Hospital Web
Links to hospital home pages worldwide
Housecall Medical Resources, Inc.
http://www.housecall.com
Human Genetics Project, Marshfield Clinic, Wisconsin
http://www.marshmed.org/genetics/
 
Immunization
http://www.cdc.gov/nip/
 
Internet Self-Assessment in Pharmacology
(Self-study guide with lecture outlines, reviews of drugs, etc.: sign in as guest)
http://www.horsetooth.com/ISAP/welcome.html
 
JAMA
http://pubs.ama-assn.org/topics.html
Table of contents for the Journal of the American Medical Association
http://www.MedsiteNavigator.com
AMA web site providing more information about Net and Web protocols and other behind-the-scenes technology
http://jama.ama-assn.org/
Netsight column from JAMA. Provides extensive dictionary of net terms and educational links for all levels
 
The Lancet
http://www.thelancet.com
 
Law and the Physician: A Practical Guide (textbook)
http://plague.law.umkc.edu/
 
Managed Care discussion group
http://www.managedhealth.com/forum.htm
 
Medical/Health Sciences Libraries on the Web
http://www.lib.uiowa.edu/hardin-www/hslibs.html
Site links to many Medical and Health sciences libraries grouped by states.
 
Medical Matrix (clinical medicine database)
http://www.medmatrix.org/reg/login.asp
 
Medical and Pharmaceuticals Industry News at Yahoo
http://biz.yahoo.com/news/medical.html
 
MedicineNet
http://www.medicinenet.com
 
MEDLINE
http://igm.nlm.nih.gov
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)
http://www.medscape.com
 
Medscape current abstracted articles page
http://www.medscape.com/home/MedPulse.html
 
Medical searches
http://www.AnnualReviews.org/ari/
 
Morbidity and Mortality Weekly Report (CDC)
http://www.cdc.gov/epo/mmwr/mmwr.html
To receive weekly table of contents and get instructions for downloading articles, send e-mail message to lists@list.cdc.gov In the body of the message, type subscribe mmwr-toc.
 
National Center for Education in Maternal and Child Health
http://www.ncemch.georgetown.edu/
Bibliographies of maternal and child health patient education materials in English, Spanish and a variety of other languages
 
National Library of Medicine
http://www.nlm.nih.gov
Gateway to a number of database resources including Medline, for which an account and password are required for access.
 
http://www.ncbi.nlm.nih.gov/PubMed/
Relatively new service to search the NLM over the WWW.
 
Neurological Disorders - NINDS Guide to Health Information about Neurological Disorders
http://www.ninds.nih.gov/hlthinhp.htm
 
The New England Journal of Medicine
http://www.nejm.org/content/index.asp
Contains complete text of some features but not the original articles.
 
Online Medicine - Dr. Tom Linden's Guide to Online Medicine
http://mcgraw-hill.inforonics.com/cgi/getarec?mgh27178
 
Pediatric Cardiology and Critical Care
http://www.kumc.edu/instruction/medicine/pedcard/cardiology/cardiology.html
 
Pediatrics Electronic Pages/American Academy of Pediatrics
http://www.aap.org
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)
http://WWW.UAB.EDU/pedinfo/
 
Pedlynx Database of Pediatric Conditions
http://www.icondata.com/health/pedbase/pedlynx.htm
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
http://www.pharminfo.com
 
PubMed
http://www.ncbi.nlm.nih.gov/PubMed/
Free MEDLINE access
 
Quackwatch
http://www.quackwatch.com/
 
Rare Diseases Clinical Research Database at NIH
http://www.rarediseases.org/
 
Reviews of medical literature at Helix
http://www.helix.com/
 
RxMed Instructions to patients (handouts on common/uncommon medical conditions)
http://www.rxmed.com/handouts.html
 
Today's Pharmaceutical and Healthcare News from PRN News Wire
http://www.prnewswire.com/
 
Travelers information
http://www.cdc.gov/travel/travel.htm
 
Treatment findings
http://www.ahcpr.gov/
 
Virtual Hospital Home Page
http://www.vh.org/
Multimedia textbooks, teaching files, clinical guidelines and assorted publications
 
The White House
http://www.whitehouse.gov
Let Bill and Hillary (or Whoever) know what you think about health care, etc.
 
World Health Organization
http://www.who.int/
 
WWW Virtual Library
http://www.ohsu.edu/cliniweb/wwwvl/all.html

NEUROGENETIC

Family Caregiver Alliance (SF based resource center for brain-impaired adults)
http://www.caregiver.org
 
Hereditary Disease Foundation
http://www.hdfoundation.org/
 
HD Mailing List
http://www.lib.uchicago.edu/~rd13/hd/mailing.html
 
Huntington Disease Home Page http://www.interlog.com/%7Erlaycock/2nd.html
 
Huntington Disease Information
http://www.lib.uchicago.edu/~rd13/hd/index.html
 
Neurogenetics Homepage at MGH/Harvard
http://neurosurgery.mgh.harvard.edu/ngenethp.htm
 
Neurology at Massachusetts General Hospital
http://neuro-www2.mgh.harvard.edu:8080/
 
Neuromuscular Disorders -Washington University School of Medicine, St. Louis, MO
http://www.neuro.wustl.edu/neuromuscular/
 
Non-Chew Cookbook
http://www.rof.net/yp/randyw/

SINGLE GENE DISORDERS - INFORMATION FOR CLINICIANS

Cystic Fibrosis Gene Therapy
http://www.medscape.com/Home/MedPulse/081597.html#17
 
Fetal Alcohol Syndrome Textbook
http://www.nap.edu/readingroom/records/0309052920.html
 
The G6PD Deficiency Homepage (Genetic, clinical, molecular aspects)
http://rialto.com/g6pd/
 
National Gaucher Foundation
http://www.gaucherdisease.org e-mail: ngf@gaucherdisease.org
 
Massachusetts General Hospital Gaucher Web Site
http://neuro-www2.mgh.harvard.edu/gaucher/main.html
 
United Kingdom's Gaucher Group
www.gaucher.org.uk
 
Gene Therapy Trials:
NIH - Dr. Brady http://intra.ninds.nih.gov/dmnb/index.html
University of Pittsburgh: http://neuro-www2.mgh.harvard.edu/gaucher/genetherapy.html
 
Genetic Counseling for Gaucher Disease - Erin Rice, M.S.
http://neuro-chief-e.mgh.harvard.edu/gaucher/clinicalperspectives/April1996/labdiagnosis.html
 
Metabolic Diseases
http://www.mailbase.ac.uk/lists/inborn-errors/files/organelle.html
Information and links from the sponsors of the Inborn-Errors Discussion List.
 
NeuroNet
http://www.neuronet.org/default.htm
Access restricted to physicians.
 
Niemann-Pick Disease - the Ara Parseghian Medical Research Foundation
www.azstarnet.com/~victory/index.html e-mail: victory@azstarnet.com
Another site for Niemann-Pick information:
Information regarding gene for Niemann-Pick C being found in lab of Dr. Pentchev's lab at NIH: http://www.nih.gov/news/pr/jul97/nind-10b.htm
 
NIH Consensus Statement on Breast Cancer Screening
 
NIH Consensus Statement on Genetic Testing for Cystic Fibrosis

SUPPORT GROUPS/PARENT ORGANIZATIONS Updated 10/14/97

Acoustic Neuroma Association
http://ANAusa.org/
 
Alliance of Genetic Support Groups
http://www.medhelp.org/geneticalliance/
 
Alzheimer's Association
http://www.alz.org
 
Amyotrophic Lateral Sclerosis Association
http://www.alsa.org
 
Association for Retarded Citizens
http://TheArc.org/welcome.html
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
http://www.ralphroberts.com/chickensoup.html
 
Chromosome Deletion Outreach
http://members.aol.com/cdousa/cdo.htm
 
Cleft Palate Support Organization - Wide Smiles
http://www.widesmiles.org/
 
Computer Resources for those with Disabilities: LINC (Learning Independence Through Computers)
http://www.linc.org
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
http://cdlsoutreach.org
 
Deafness (National Information Center on Deafness (NICD) - Gallaudet University
http://www.gallaudet.edu/~nicd/ E-mail: nicd@gallau.gallaudet.edu
 
The Council for Disability Rights
http://disabilityrights.org/
 
Down Syndrome
http://nas.com/downsyn/welcome.html
 
Down Syndrome Family Empowerment Network
http://www.downsyndrome.com/
# of Down Syndrome-related links - family centered site.
 
Upside! Down Syndrome Society
http://www.telebyte.com/upside/upside.html
Good starting place for new families. Straightforward organization. Links to newsgroups, mailing lists and web pages.
 
National Down Syndrome Society
http://www.ndss.org
Education, research & advocacy for Down Syndrome.
 
Re: piracetam and TNI (targeted nutritional intervention):
http://members.aol.com/TheRagans/
http://www.davlin.net/users/lleshin/piracet.htm
http://www.undertech.com/ds/index.html
 
Dwarfism
http://www.lpaonline.org/
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.
http://disability.ucdavis.edu
(Use FSH for logon and password)
 
Familial Dysautonomia
http://www.med.nyu.edu/fd/fdcenter.html
 
Families of Spinal Muscular Atrophy
http://www.fsma.org/
 
Family Village (U. Wisc) Resources on Disability
http://www.familyvillage.wisc.edu/card_ab.htm
http://www.familyvillage.wisc.edu/specific.htm (Card Catalog)
 
Fanconi Anemia Home Page
http://www.rio.com/~fafund/FAHTML/FAHome/
 
Fragile X Organization
 
Gaucher Disease Web Site - National Gaucher Foundation
http://neuro-www2.mgh.harvard.edu/gaucher/main.html or
 
Genetic Conditions/ Rare Conditions: Support Groups & Information Page
(D. Collins)
/gec/support/index.html
 
Genetic Syndrome Support Groups and Other WWW Sites (Jeff Shaw)
http://members.aol.com/DNAcutter/sgroup.htm or
http://members.aol.com/dnacutter/sgroup.htm
 
Hereditary Disease Foundation
http://www.hdfoundation.org/
 
Huntington Disease Society of America
 
Hygeia - Support network for parents experiencing fetal loss
 
Little People of America Homepage
http://www-bfs.ucsd.edu/dwarfism/lpa.htm
 
Muscular Dystrophy Association
http://www.mdausa.org
 
National Ataxia Foundation
http://www.ataxia.org
 
National Ataxia-Telangiectasia Children's Project
http://www.med.jhu.edu/ataxia/
 
National Center for Education in Maternal and Child Health
http://www.ncemch.georgetown.edu
 
National Center for Youth with Disabilities
http://www.cyfc.umn.edu/Youth/ncyd.html
 
National Easter Seals Society
 
National Institute of Neurologic Disorders and Stroke
http://www.ninds.nih.gov/
 
National Information Center for Children and Youth with Disabilities (NICHCY)
http://www.nichcy.org/
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
http://www.nih.gov
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:
http://clinicalstudies.info.nih.gov/
 
National Organization on Disabilities
http://www.nod.org
 
National Parent Network on Disabilities
http://www.npnd.org
 
National Parent to Parent Network
http://www.waisman.wisc.edu/~rowley/mums/home.htmlx
 
Neurofibromatosis, Inc.
http://nfinc.org/
 
Neuromuscular Home Page
http://www.neuro.wustl.edu/
 
NF2 Review
http://www.hei.org
 
Our Kids
http://www.our-kids.org/
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.
 
ParentsPlace
http://www.parentsplace.com
 
Rare Genetic Diseases in Children - Support Resources Directory
http://mcrcr2.med.nyu.edu/murphp01/support.htm
 
Rett Syndrome
http://www.rettsyndrome.org or e-mail: irsa@rettsyndrome.org  
Information from International Rett Syndrome Association
 
Sibling Issues: Sibling Support Project
http://www.chmc.org/departmt/sibsupp/
List of sibling support groups in US and Canada. Sibnet listserv mailing list for sibs of all ages of disabled persons.
 
Spina Bifida
http://www.waisman.wisc.edu/%7Erowley/sb_kids.htmlx
Global resources, organizations, mailing lists.
 
Special Needs Children: Internet Resources for Special Children (IRSC)
http://www.irsc.org/
Alphabetical table of contents covering a wide range of disabilities from ADD to visual impairments.
 
SOFT Home pages (support for Trisomy 13/18)
http://www.trisomy.org
http://pages.prodigy.com/NC/soft/soft.html
 
National Tay Sachs & Allied Diseases (NTSAD)
http://mcrcr2.med.nyu.edu/murphp01/taysachs.htm
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:
http://www.noah.cuny.edu/pregnancy/march_of_dimes/birth_defects/taysachs.html
http://intra.ninds.nih.gov/dmnb/index.html
http://www.stepstn.com/nord/rdb_sum/9.htm
 
Thrive@pathfinder
http://www.thriveonline.com
 
Tuberous Sclerosis - NTSA
http://www.ntsa.org/guests/main.web e-mail: ntsa@ntsa.org
 
Turner's Syndrome
http://www.turner-syndrome-us.org/
Turner's Syndrome Society of US
 
Understanding Gene Testing Booklet from the NIH
http://www.accessexcellence.org/ae/AE/AEPC/NIH/index.html
 
Von Hippel Lindau Family Alliance
http://www.vhl.org
 
Your Child's Health Columns (MD authorized disease briefs for parents)

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Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu


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