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Links to Major Medical / Research Sites

Site presented by Bill Tillier

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Web sites for neuromuscular disorders:

The Myositis Association (formerly The Myositis Association of America (MAA)) http://www.myositis.org
TMA publishes an excellent newsletter called OUTLOOK.

Muscular Dystrophy Canada / Dystrophie musculaire Canada. http://www.muscle.ca/

The Muscular Dystrophy Campaign (England): http://www.muscular-dystrophy.org/

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Web sites for IBM Information:

Homepage of Dagmar Slaven, an IBM patient. http://www.myomusings.com/

Here is an outstanding website presented by an IBM patient, Mike Shirk.

The Inclusion Body Myositis Foundation (IBMF)
Steven A. Greenberg, MD, Director
http://www.ibmfoundation.org/

The Muscular Dystrophy Association of America recently put IBM under its list of covered disorders.
They are at: http://www.mdausa.org
For their page on IBM, see: http://www.mdausa.org/disease/inclusion-body-myositis

The IBM Research Project. A research group, including Steven A. Greenberg, MD and Anthony A. Amato, MD, dedicated to understanding and finding treatment for sporadic inclusion body myositis (s-IBM) and other inflammatory myopathies. This is a multidisciplinary group, part of the Brigham and Women's Hospital, Department of Neurology, Division of Neuromuscular Disease, Harvard Medical School; the Children's Hospital Informatics Program; and the Harvard-MIT Division of Health Sciences and Technology. http://www.s-ibm.org/

IBM overview: http://www.patient.co.uk/doctor/inclusion-body-myositis

The Muscular Dystrophy Campaign (England) IBM overview:

National Institute of Neurological Disorders and Stroke (NINDS) site on IBM:. http://www.ninds.nih.gov/health_and_medical/disorders/inclusion_doc.htm

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Selected Medical Related:

American Medical Association: http://www.ama-assn.org/

American Academy of Family Physicians: http://www.aafp.org/

Pub Med: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi The comprehensive site for most medical research done in the world.

Medline Plus http://medlineplus.gov/ Look up anything to do with health care on this site from, prescription drugs to local resources to symptoms and diseases.

RxList http://www.rxlist.com/script/main/hp.asp RxList is "the Internet drug index," and you search by prescriptions dispensed, names searched or just by letter.

Patient Care http://www.cumc.columbia.edu/health/index.html Columbia University Medical Center lists a number of patient resources, including tools for finding a doctor, dentist and hospital.

MediLexicon http://www.medilexicon.com/ At MediLexicon, you can use the medical dictionary search, hospital search, medical abbreviations search or read all the latest medical news.

InteliHealth http://www.intelihealth.com/IH/ihtIH This reference site has an Ask the Expert section, as well as a database full of information for diseases and conditions, from asthma to digestive issues to weight management to STDs.

Healthfinder http://www.healthfinder.gov/ This government site features a Drug Interaction Checker, a Health Library and consumer guides.

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Other:

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.

Arthritis Daily
http://www.arthritisdaily.com/
News from Around the World on Arthritis and Related Diseases

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.

Baylor College of Medicine (Neuromuscular)
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.

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/
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/centers-and-services/neuromuscular-program
The Neuromuscular Program began in 1978. The Web site includes information on neuromuscular diseases and DMD genetics.

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
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.disability.gov/
Disability.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
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.

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.

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.

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.

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.

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.

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.

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.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.

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/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."

Rehabilitation Research and Training Center in Neuromuscular Diseases (RRTC/NMD)
REHABinfo Network - Neuromuscular Diseases Information Clearinghouse.

http://www.rehabinfo.net/
Seeks to improve the lives of individuals with neuromuscular diseases by developing and evaluating new strategies that address lifelong needs for research-based medical care and counseling, psychosocial well-being, education, and independent living. Disseminates disability-related information through the Web site: including a neuromuscular disease information center, medical and rehabilitation services, gene testing, clinical studies and many others.

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
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.

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