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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.
American Occupational Therapy Association
http://www.aota.org/
The American Occupational Therapy Association (AOTA) has launched an
online directory designed to help consumers locate occupational
therapists in their area. The Association's Web site offers a new
feature called "Find an Occupational Therapist," which permits
individuals to search for an occupational therapist by specialty or
locality. Over 90 specialty areas of practice are represented in the
directory.
Athena Diagnostics, Inc.
http://www.athenadiagnostics.com/
Athena Diagnostics is a reference laboratory dedicated to the
development and commercialization of diagnostic testing for neurological
disorders. Expertise includes diagnosis in the areas of: peripheral
nerve disorders, neurogenetic disorders, Alzheimer's disease,
paraneoplastic syndromes, movement disorders, neuromuscular disorders,
and ataxia. The site provides an interactive, searchable catalog of
testing services for neurological disorders, educational materials, and
resources available from Athena Diagnostics.
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Center for Human Genetics (Boston University)
http://www.bumc.bu.edu/Dept/Home.aspx?DepartmentID=118
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/
http://www.centerwatch.com/thehealthexchange.html
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://ucneurology.uchicago.edu/
http://ucneurology.uchicago.edu/Clinical_Trials/clinical_trials.html
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/clinicalservices/Site1556/mainpageS1556P0.html
The Neuromuscular Program began in 1978. The Web site includes
information on neuromuscular diseases and DMD genetics.
Children's International Neuromuscular Research Group (CINRG)
http://www.cinrgresearch.org/
CINRG was formed in 1999 as the clinical research arm of the Duchenne
Muscular Dystrophy Research Center (DMDRC) and the Research Center for
Genetic Medicine at the Children’s National Medical Center (CNMC).
The CINRG program seamlessly integrates basic science projects in
gene expression profiling, high throughput drug screening in the mdx
mouse and drug efficacy and toxicity studies in golden retriever
muscular dystrophy (GRMD) with an international, multicenter human
clinical trial network.
CINRG is based at Children’s National Medical Center which is the
site of an MDA Clinic.
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Columbia University, The Eleanor and Lou Gehrig MDA/ALS Center
http://www.columbiaals.org/
This site offers information on the MDA/ALS Center services, patient
care and education, activities and research updates.
Council of Regional Networks for Genetic Services (CORN)
http://www.kumc.edu/gec/prof/corn.html
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).
DisabilityInfo
http://www.disabilityinfo.gov/
DisabilityInfo.gov is the comprehensive United States Federal Web site
of disability-related government resources. Subjects covered are
employment, education, housing, transportation, health, income support,
technology, community life and civil rights.
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Duke University Medical Center
http://wwwchg.mc.duke.edu/
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://www.enmc.org/
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. Specific
reports from ENMC meetings can be accessed in their entirety at
http://journals.elsevierhealth.com/periodicals/NMD/content/workshop.
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.
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GeneTests-GeneClinics
http://www.genetests.org/
GeneTests-GeneClinics is a knowledge base of expert-authored, up-to-date
information relating genetic testing to the diagnosis, management and
counseling of individuals and families with inherited disorders. The
International Clinic Directory is intended to help patients and
clinicians in the U.S. who need to refer family members living elsewhere
to a clinic located near them. It may also serve the same purpose for
clinicians and patients in other countries. GeneClinics disease profiles
are called GeneReviews or Reviews.
Genetic Alliance
http://www.geneticalliance.org/
Genetic Alliance 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.
GovBenefits
http://www.govbenefits.gov
GovBenefits is a Web site designed as a one-stop resource for
Americans to
learn if they are eligible to receive government benefits. This Web site
allows a user to answer a short series of simple, yes-no questions, then
returns a list of federal benefit programs for which he or she may be
eligible. The online screening tool is free, anonymous and completely
confidential. Information that could be used to identify the user is not
required.
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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.
The new easy-to-use Spanish-language consumer resource available at
www.healthfinder.gov/espanol offers over 300 topics from 70
government agencies and nonprofit organizations. A unique feature of
healthfinder® español is the ease with which users of the
site can switch between Spanish and English versions of the same
information. English-speaking family members or health professionals can
use this feature to search in English for information to share with
Spanish-speaking relatives or patients.
Italian MuscleNet
http://www.bio.unipd.it/
The regional Neuromuscular Center Department of Neurological and
Psychiatric Sciences at the University of Padova, 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.
Life Challenges CyberCenter
http://www.lifechallenges.org/
Life Challenges is a non-profit online resource center offering people
support and hope while they face challenges, crises, change, unexpected
events and turning points in their lives. The emphasis is on using
challenges as opportunities for growth and transformation in healing our
minds and bodies. The site includes articles, personal stories and
self-help tools.
Miami, University of, ALS Clinical and Research Center (Kessenich
Family MDA ALS Center)
http://www.miami-als.org/
The University of Miami Kessenich Family MDA ALS Center and ALS Clinical
and Research Center Web site provides a body of information about
amyotrophic lateral sclerosis (ALS), clinical care centers, local
chapters and support groups, equipment, and multi-dimensional support to
patients with ALS and their families from the time of diagnosis
throughout the course of the disease, while conducting advanced research
into the cause of and cure for ALS.
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National Health Information Center
http://www.health.gov/nhic/
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 Center for the Dissemination of Disability Research (NCDDR)
http://www.ncddr.org/
Disseminates research on employment outcomes, health and function,
technology, independent living and community integration, associated
disability, knowledge dissemination and utilization, ADA technical
assistance, etc.
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.
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National Library of Medicine (NML)
http://www.nlm.nih.gov/
The world's largest biomedical library providing access to MEDLINE,
other databases and Internet services, historical materials, research
programs, training, special exhibits and grants.
- PubMed/MEDLINE -
http://pubmed.gov/
Pubmed provides free access to MEDLINE and other resources. Over 300
million searches are conducted on PubMed each year. It is the health
professional’s premier online information tool.
- MEDLINEplus -
http://medlineplus.gov/
MEDLINEplus is the free consumer health information resource from
the National Library of Medicine, National Institutes of Health.
Health professionals and consumers alike can depend on it for
information that is authoritative and up to date. MEDLINEplus has
extensive information from the National Institutes of Health and
other trusted sources on over 500 diseases and conditions. There are
also lists of hospitals and physicians, a medical encyclopedia and
dictionaries, health information in Spanish, extensive information
on prescription and nonprescription drugs, current health news and
links to thousands of clinical trials. MEDLINEplus is updated daily.
There is no advertising on this site, nor does MEDLINEplus endorse
any company or product.
- ClinicalTrials.gov -
http://clinicaltrials.gov/
ClinicalTrials.gov is a comprehensive database of clinical trials in
the US.
National Institute of Neurological Disorders and Stroke (NINDS)
http://www.ninds.nih.gov/
Provides information about research and clinical trials for neurologic
diseases being conducted at the National Institutes of Health (NIH).
This site also contains information about the Muscular Dystrophy
Research and Education Plan for NIH.
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National Organization for Rare Disorders (NORD)
http://www.rarediseases.org/
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.naric.com/
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.
The Neuromuscular Center
Institute for Exercise and Environmental Medicine
http://ieemphd.com/NMC%20Homepage/myophosphorylase_deficiency.htm
The Neuromuscular Center (NMC) is one of the major divisions of the
Institute for Exercise and Environmental Medicine (IEEM), a clinical and
research facility sponsored by Presbyterian Hospital of Dallas and the
University of Texas Southwestern Medical Center at Dallas. Members of
the medical staff combine their knowledge with basic science and
clinical research to apply scientific discovery to human conditions that
affect exercise performance. The NMC is dedicated to evaluating and
treating individuals who experience abnormal muscle pain, fatigue, and
weakness during exercise.
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Northeast Passage
http://www.nepassage.org/
Northeast Passage serves individuals with disabilities, their friends,
families and communities to explore health, wellness, access, sports and
recreation. Northeast Passage works to create an environment where
individuals with disabilities can recreate with the same freedom of
choice and independence as their able-bodied peers. Mission is
accomplished through education, problem solving, and the creation of
opportunities. Northeast Passage works in cooperation with other
programs to create a strong network of accessible recreation, and the
site includes links to a variety of programs and resources.
OMIM (Online Mendelian Inheritance in Man)
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=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/Genbank/ provides information on
genetics, genome information and sequencing.
Rochester, University of
http://stronghealth.com/services/neurology/
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.
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.
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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/programs/neuromuscular.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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