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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