This area will contain links to ALS pages available outside this WFN/ALS Website. These links will be verified periodically and every effort will be made to ensure the addresses are up to date; however, the WFN MND/ALS Committee is not responsible for the content of or the access to these sites. If you have trouble accessing a site from one of our links, please tell the
Webmaster so we can update as soon
as possible.
Contents:
ALS Research Group- Information about the ALS Genetic Repository Project and other initiatives from this gathering of prominent ALS/MND researchers.
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- ALS C.A.R.E. Project
- The ALS C.A.R.E. (Clinical Assessment, Research and Education) Project
invites health professionals to participate in creating a national
database on ALS to collect clinical information on disease progression,
and diagnostic and treatment approaches and their outcomes.
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- Neuromuscular Disease Center
- This attractive site is maintained by the Washington University School of Medicine, St. Louis, MO. It contains much basic information about neuromuscular
diseases, including ALS, with links to other sites including MEDLINE.
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- Center for ALS Research at Johns Hopkins University
- The site describes the research and clinical trials at Johns Hopkins and
offers basic information on ALS.
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- Stichting ALS Centrum Nederland
- The site describes work being done by this foundation and its two ALS Centres.
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- International Alliance of ALS/MND Associations
- "The Alliance functions primarily as a forum for the exchange of information on all aspects of the disease, research and management of care as well as the provision of support through networking and sharing the development of ideas on good practice. Its developing role is the advancement of the patients' views in discussions affecting the well-being of people with ALS/MND."
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- ALS Connection Registry
- This MDA funded, patient-driven website collects data from ALS patients in North America. The data is used for ongoing ALS research. The ALS Connection Registry is coordinated by The Forbes Norris MDA/ALS Research Center at California Pacific Medical Center and the San Francisco Coordinating Center.
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- The ALS Association Web Site
- An informative site aimed especially at ALS patient resources and information,
with summaries of research and treatment. The ALS Association has provided addresses of local chapters and patient support groups in the United States.
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- The Muscular Dystrophy Association
- The Muscular Dystrophy Association website features news and information on ALS and other neuromuscular diseases, including The MDA/ALS Newsmagazine, a chat room, clinical trials listings, research news, and other researcher and patient services and resources. Research grant inquiries should be directed to Sharon Hesterlee, Ph.D., MDA's Director of Research Development at shesterlee@mdausa.org. All other inquiries (including services, equipment purchase, support groups, MDA ALS Clinics, educational seminars, etc) can be directed to Annie Kennedy, Director of the ALS Division, at akennedy@mdausa.org.
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- Center For Neurologic Study (CNS)
- Richard Smith founded CNS over 20 years ago. It is an independent research foundation, dedicated to research on ALS and a few other neurological
conditions. There are links to full-text articles and newsletters, lists of videos, etc.
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- World Muscle Society
- "The World Muscle Society - WMS - is a new international, multidisciplinary, scientific society, dedicated to the advancement and dissemination of knowledge in the field of neuromuscular disorders, for the benefit of patients. WMS was founded in London, UK, on 4th June 1995."
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- Clinical Trials Summary: from the NIH
- The U.S. National Institutes of Health, through its National Library of Medicine, has developed this clinical trials sumamry to provide health professionals, patients, family members and members of the public current information about clinical research studies.
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- ALS/SLA Society of Canada
- Research and patient information
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- World Federation of Neurology
- The parent organization for the WFN Research Group on Motor Neuron Diseases Constitution. This website presents clinical and basic neuroscience information for its membership.
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- The American Academy of Neurology (AAN)
- The AAN is a major professional organization for neurologists. The site offers a wide range of information. Specific ALS information for patients is also found by going into the "About Neurology" section and clicking the link for "Neurological Conditions".
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- Neurosciences on the Internet
- Neurosciences on the Internet is a useful site created by Neil A. Busis, M.D., a neurologist. This page contains links to hundreds of sites covering a number of neurological disorders.
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- The American Neurological Association (ANA)
- The ANA is a professional organization of academic neurologists and
neuroscientists. Newsletters, policy issues, and meeting dates are posted
on the site.
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- The Whole Brain Atlas
- An information resource for central nervous system imaging which integrates
clinical information with magnetic resonance (MRI), x-ray computer topography
(CT), and nuclear medicine images. Gorgeous images, links to many useful
neurology, news and reference sites.
- National Library of Medicine
- The National Library of Medicine's online resources are vast and varied, including databases for PubMed and OMIM that are free.
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- American Association of Neuromuscular &
Electrodiagnostic Medicine
- The AANEM is the largest organization worldwide dedicated solely to the scientifically-based advancement of electrodiagnostic medicine. The AAEM was founded in 1953 and the membership has grown steadily over the years to almost 4500
physicians, mainly neurologists and physiatrists. The primary goal of the AAEM is to increase the quality of patient care, specifically for those patients with disorders of skeletal muscles, neuromuscular junctions, and/or the central and peripheral nervous systems, by contributing to steady improvement in the methods of electrodiagnostic medicine. This goal is accomplished through programs in education, research and quality assurance.
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- U.S. Food and Drug Administration
- Access to the latest in approved drugs and medical devices for man and
beast, advisories and alerts, upcoming meetings, FDA news.
The
Patient Resources section has information on electronic mailing lists and discussion groups.
