Links to Major Medical / Research Sites

Site presented by Bill Tillier


Webpage Menu:

⬛ Main Page      

⬛ Overview      

⬛ Coping      

⬛ Complications

⬛ Current Research     

⬛ Highlighted Research     

⬛ Past Research     

⬛ Autoimmune


Page Menu:

⬛ Web sites for IBM Information.

⬛ Web sites for neuromuscular disorders.

⬛ Other.


Web sites for IBM Information:

Cure IBM is dedicated to inclusion body myositis awareness, education, and research. Cure IBM Website.

National Organization for Rare Disorders (NORD)

IBM overview:

The Muscular Dystrophy Campaign (England) IBM overview:
IBM Alert Card:
See it here: Alert Card

National Institute of Neurological Disorders and Stroke (NINDS) site on IBM:.

Washington University School of Medicine in St. Louis, MO, has announced the opening of an IBM Specialty Clinic devoted to inclusion body myositis. IBM Specialty Clinic at Washington University, St. Louis.



Web sites for neuromuscular disorders:

The Myositis Association (formerly The Myositis Association of America (MAA))
TMA publishes an excellent newsletter called OUTLOOK.

Muscular Dystrophy Canada / Dystrophie musculaire Canada.

The Muscular Dystrophy Campaign (England):




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.

Arthritis Daily
News from Around the World on Arthritis and Related Diseases

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.

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.

Children's Hospital, Boston
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
This site offers information on the MDA/ALS Center services, patient care and education, activities and research updates.

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.

Genetic Alliance
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.

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 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)
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.

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 provides information on genetics, genome information and sequencing by clicking on "Overview" under "Genbank Sequence Database."

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.