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American Academy of Neurology
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)
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
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.
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.
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.
Center for Human Genetics (Boston University)
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
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
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
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.
Columbia University, The Eleanor and Lou Gehrig MDA/ALS Center
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)
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
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.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.
Duke University Medical Center
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
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.
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.
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 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.
"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.
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
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)
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.
National Health Information Center
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)
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
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 (NML)
The world's largest biomedical library providing access to MEDLINE, other databases and Internet services, historical materials, research programs, training, special exhibits and grants.
National Institute of Neurological Disorders and Stroke (NINDS)
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.
National Organization for Rare Disorders (NORD)
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
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
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.
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)
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
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
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
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
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.