Alliance of Genetic Support Groups, The
http://medhelp.org/www/agsg.htm
The Alliance of Genetic support Groups is a non-profit organization dedicated to
helping individuals and families who have genetic disorders. A toll-free helpline is
available as a resource for consumers and professionals who are looking for genetic
support groups and genetic services.

American Academy of Neurology
http://www.aan.com/
The American Academy of Neurology (AAN) is a professional organization
representing neurologists worldwide. This site provides information to both medical
professionals and to the public. A "Patient Information Guide" is available under
"Neurological Conditions" and has been developed by the American Academy of
Neurology to help physicians and others locate patient-oriented materials and services
for individuals with neurologic disorders.

American Medical Association (AMA)
http://www.ama-assn.org/
The American Medical Association (AMA) provides a variety of information on
health and medical resources which include: name, location and specialty of over
650,000 physicians licensed to practice in the U.S., scientific journals and news,
medical science and education, information about the AMA and documents of public
interest, employment opportunities, membership and constituency groups, as well as
many links to other medical sites.

Baylor College of Medicine (Neuromuscular)
http://www.bcm.tmc.edu/neurol/
This site includes information on Baylor College of Medicine departmental clinics,
faculty, training programs, research on neuromuscular diseases, neurology news, a
comprehensive index, and the MDA/ALS Research and Clinical Center.

Center for Human Genetics (Boston University)
http://med-info.bu.edu/dna-labs.htm
The Center for Human Genetics provides the following services: routine and
specialized chromosome studies; prenatal diagnosis of genetic disorders; DNA
analysis for diagnosis and carrier detection; maternal serum screening for Down's
syndrome and neural tube defects; biochemical genetic studies; cancer cytogenetics;
paternity testing using DNA analysis and genetic counseling and birth defects
evaluation.

CenterWatch -- Clinical Trials Listing Service
http://www.centerwatch.com/
CenterWatch is an international listing of clinical research trials. This listing can be
used to search for clinical trials, find out information about physicians and medical
centers performing clinical research, and to learn about drug therapies newly
approved by the Food and Drug Administration. An e-mail notification service is
available which will inform you of future postings in a particular therapeutic area.

Chicago, The University of, Department of Neurology
http://drugs.bsd.uchicago.edu/~neurowww/
The site of the Department of Neurology at The University of Chicago provides
information on clinical drug trials, clinics, faculty, clinical and research laboratories
and links to other neurology home pages.

Children's Hospital, Boston
http://www.childrenshospital.org/neurology/neuromus.html
The Neuromuscular Program began in 1978. The Web site includes information on
neuromuscular diseases and DMD genetics.

Council of Regional Networks for Genetic Services (CORN)
http://www.cc.emory.edu/PEDIATRICS/corn/
The Council of Regional Networks for Genetic Services (CORN) provides a forum
for dialogue and national coordination among the ten regional networks representing
all fifty states, the District of Columbia, Puerto Rico, and the Virgin Islands. CORN
brings together network representatives to encourage and facilitate communication
and planning for genetic services as well as addressing national public health priorities
in genetics. CORN membership includes representatives from each of the regional
genetic networks, national sickle cell disease programs, and the Alliance of Genetic
Support Groups, and consists of genetic services providers, public health officials,
consumers, and health care professionals.

Dana BrainWeb: Brain Diseases and Disorders
http://www.dana.org/brainweb/
The Dana BrainWeb guide comes from the Dana Alliance for Brain Initiatives, an
independent non-profit organization of more than 175 pre-eminent neuroscientists,
including six Nobel laureates, dedicated to advancing education about the personal
and public benefits of brain research. The Dana BrainWeb is the result of a search of
hundreds of sites to select, for each of 23 common brain diseases and disorders, up to
four sites that provide validated current information useful for the lay person. For
neuromuscular disorders see the section on amyotrophic lateral sclerosis (ALS).

Duke University Medical Center
http://www2.mc.duke.edu/depts/medicine/medgen/
The Duke University Medical Center Section on Medical Genetics includes
information on how to participate in genetic studies. Descriptions of each of the
diseases under study as well as current research efforts, support organizations and
recent references are included.

European Neuromuscular Centre
http://enmc.spc.ox.ac.uk/
European Neuromuscular Centre (ENMC) is a partner in the development of
collaborative research activities. It ensures financial support for ensuing workshops,
offers organizational support through its secretariat in Baarn, The Netherlands, and
acts as a clearinghouse for relevant research related data. ENMC has been able to
stimulate and facilitate top-level scientific collaboration concerning many
neuromuscular diseases such as spinal muscular atrophies, Duchenne muscular
dystrophy, motor neurone disease, limb-girdle dystrophies and others.

Family Village
http://www.familyvillage.wisc.edu/
The purpose of Family Village is to integrate information, resources, and
communication opportunities on the Internet for persons with mental retardation and
other disabilities, their families, and those that provide them services and supports.
Additions and updates are made on a weekly basis.

Federal Government Agencies
http://www.lib.lsu.edu/gov/fedgov.html
Provides opportunity for keyword search of federal agencies.

Healthfinder
http://www.healthfinder.gov/
"Healthfinder" is a gateway consumer health and human services information Web
site from the United States government. This site is intended to lead users to selected
online publications and medical journals, clearinghouses, databases, Web sites, and
support and self-help groups, as well as the government agencies and not-for-profit
organizations that produce reliable information for the public. The aim is to provide
information that can help the consumer make better choices about health and human
services needs for self and family.

Healthgate Free MedLine
http://www.healthgate.com/
Online source for health, wellness and biomedical information. Opportunity available
to search MEDLINE, CANCERLIT and more for free. View all topics on the
Wellness Center, men's health, latest topics in medicine and earn continuing Medical
Education credits. HealthGate's Wellness Center is an interactive health information
service and community support group for people with chronic or acute health
conditions. This site offers medical information to assist in making personal medical
and lifestyle decisions and a supportive community to help manage life and illness.

Italian MuscleNet
http://www.bio.unipd.it/
The regional Neuromuscular Center Department of Neurological and Psychiatric
Sciences at the University of Padua, Italy website contains clinical information and
diagnostic criteria, epidemiology of inherited neuromuscular disorders, international
neuromuscular patients associations and support groups and current research on
muscle and neuromuscular disorders.

Kaleidoscope
http://www.ktv-i.com/
On-line source of information related to health, wellness and ability. The goal is to
form an interactive community that provides easy access to quality information and
services for people with health concerns and disabilities. This site through the
COMMUNITY CENTER/Reading Room contains an extensive collection of top
medical and scientific journals, news archive, chat rooms, message boards, links and
more! Timely information is available on medical breakthroughs, cutting edge
technology, health care, disability issues, and nutrition and lifestyles through the
NEWS section. The SUPPORT AGENCIES feature provides disease-related
contact groups.

National Health Information Center
http://nhic-nt.health.org/
The National Health Information Center (NHIC) is a health information referral
service. NHIC puts health professionals and consumers who have health questions in
touch with those organizations that are best able to provide answers. NHIC was
established in 1979 by the Office of Disease Prevention and Health Promotion
(ODPHP), Office of Public Health and Science, Office of the Secretary, U.S.
Department of Health and Human Services. Included are announcements of new or
upcoming activities; health information resource database, publications, Partnerships
for Networked Consumer Health Information conferences, and the Department of
Health and Human Services home page.

National Institute of Health (NIH) Clinical Research Studies
http://www.cc.nih.gov/nihstudies/
A collection of research studies being conducted at the NIH Clinical Center.
Searches can be conducted by diagnosis, institute of primary investigator or other key words or phrases.

National Library of Medicine (NLM)
Free MedLine Service
http://www.nlm.nih.gov/
NLM provides access free-of-charge to its entire MedLine database of more than
8.8 million references to articles published in 3800 biomedical journals.

National Institute of Neurological Disorders and Stroke (NINDS)
http://www.ninds.nih.gov/
Provides a guide to voluntary health organizations according to disease or disorder.
The intent is to provide information useful to individuals nationally, and for this reason
many local groups have not been included that offer valuable assistance to patients
and their families in individual states or cities.

National Organization for Rare Disorders (NORD)
http://www.stepstn.com/nord/org_sum/147.htm
The National Organization for Rare Disorders, Inc. (NORD) is a not-for-profit
federation of voluntary health organizations dedicated to helping people with rare
orphan diseases and assisting the organizations that service them. Through its Rare
Disease Database (RDB), NORD provides reports in understandable, layperson's
terminology on more than 1,000 rare disorders.

National Rehabilitation Information Center
http://www.cais.com/naric/
The National Rehabilitation Information Center (NARIC) is a library and information
center on disability and rehabilitation. NARIC distributes the results of federally
funded research projects and maintains a monthly updated document collection of
journal articles and books.

Neuroscience Web Search
http://www.acsiom.org/nsr/neuro.html
This site contains a full-text index of over 121,000 web pages related to neuroscience.
The definition of "neuroscience" is a broad one, and includes the home pages of
neuroscientists, neuro-medical links, and computational neuroscience. Everything on
this site is relevant to the structure and function of invertebrate and vertebrate
nervous systems.

OMIM (Online Mendelian Inheritance in Man)
http://www.ncbi.nlm.nih.gov/Omim/
This database is a catalog of human genes and genetic disorders. The database
contains textual information, pictures, and reference information. It also provides
many links to the National Center for Biological Information's (NCBI) Entrez
database of MEDLINE articles and sequence information. OMIM is used by
physicians and other professionals concerned with genetic disorders, by genetics
researchers, and by advanced students in science and medicine. The GenBank
database located at http://www.ncbi.nlm.nih.gov/ provides information on genetics,
genome information and sequencing by clicking on "Overview" under "Genbank
Sequence Database."

PEDBASE
http://www.icondata.com/health/pedbase/
The purpose of the Pediatric Database is to provide information on various Pediatric
disorders. The Pediatric Database (PEDBASE) contains descriptions of over 500
childhood illnesses and has been on the Internet since November 15, 1995. Beginning
in November 1966, new diseases will be added and revisions made to existing files.
Each disease entry notifies user of last update and contains pertinent facts concerning
the disease. Internet Links are indicated when available.

Research and Training Center for Neuromuscular Diseases - UC at Davis
http://disability.ucdavis.edu/
The Department of Physical Medicine and Rehabilitation at UC Davis disseminates
disability-related information through the website: research and training center home
page, facioscapulohumeral muscular dystrophy information page, neuromuscular
disease information database and a World Wide Web bulletin board system.

Rochester, University of
http://www.urmc.rochester.edu/smd/neuro/ The site of the Department of Neurology
at the University of Rochester Medical Center provides information on faculty,
training programs, clinics and neuromuscular research, both basic research and
clinical trials.

Scottish Rite Children's Medical Center
http://www.scottishritechildrens.org/services/mdaserv.shtml
Scottish Rite Children's Medical Center in Atlanta, Georgia, offers pediatric
healthcare information on illness, injury, health, parenting and safety of infants,
children and adolescents. The MDA Clinic at Scottish Rite is devoted to children and
staffed by pediatric trained professionals.

Vermont Regional Genetics Center
http://www.vtmednet.org/~m145037/vhgi_mem/myodys/myodys.htm
The Vermont Regional Genetics Center provides genetics services for most of
Vermont and much of upstate New York. The Web site contains information on
prenatal and newborn screening programs and an excellent handbook on Myotonic
dystrophy. (See http://www.vtmednet.org/search.htm for a variety of health related
links available on the Internet.)

Washington University (St. Louis) School of Medicine
Neuromuscular Disease Center
http://www.neuro.wustl.edu/neuromuscular/
The Washington University School of Medicine Neuromuscular Disease Center
contains information on neuromuscular, spinal and cerebral disorders and syndromes,
guidelines for neuromuscular evaluation, autoantibody testing and patient information.

World Federation of Neurology
http://www.wfnals.org
The World Federation of Neurology Amyotrophic Lateral Sclerosis (WNF/ALS)
Web site is sponsored by the World Federation of Neurology to link researchers and
clinicians worldwide. The site contains information about ALS research and
treatments, current clinical therapeutic trials, conferences and meetings, MDA/ALS
research and clinical centers and other resources of interest to researchers and
patients.

Yale Neuromuscular MDA/ALS Program
http://info.med.yale.edu/neurol/CNeurophysiol/Welcome.html
The Yale Neuromuscular Program provides primary and referral services for all
disorders of the peripheral nerves and muscles and an MDA research and clinical
center. It specializes in ALS, myasthenia gravis, myopathy (polymyositis,
dermatomyositis, inclusion body myositis), neuropathy (CIDP, CMT, Guillain-Barré,
diabetic neuropathy, undiagnosed), muscular dystrophy (FSH, Duchenne, Becker,
limb-girdle, myotonic, oculopharyngeal) and related disorders.

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