Institut de Myologie Autour des malades : pôles de recherche, d'enseignement et d'expertise sur le muscle Access to extranet

General web sites

We propose a selection of web sites arranged by topics that will provide you with additional information on neuromuscular disorders.These sites have been qualified by us in order to give you a better idea of what they contain.

France

Association Française contre les Myopathies (in french and in english)
The latest news on every pathology have been updated in june, 2004 in french. English version is coming !
Pour en savoir plus : www.afm-france.org
Orphanet (in french and in english)
Database of rare diseases and orphan drugs (information on the disease, combinations of diseases, consultations in France, etc); research by disease names (enter name of the disease, even incomplete), diagnostic laboratory, clinical trials, research program, consultation, association, professional (by name and specialty), drug.
Pour en savoir plus : www.orpha.net
A new international scale of motor function measure for neuro-muscular diseases
 L’Escale is a hospital unit which cares for physically disabled children living with their families. The absence of a clinical assessment tool adapted to the care of young children with neuro-muscular diseases (infantile spinal amyotrophy, congenital myopathy,...) encouraged the Escale team to create a scale with same basis as the Gross Motor Function Measures but named Motor Function Measure for neuro-muscular diseases.

Europe

ENMC (European neuromuscular Center)
The aim of ENMC is to encourage and make easier top-level scientific collaboration concerning many neuromuscular diseases such as Spinal Muscular Atrophies, Duchenne Muscular Dystrophy, Post Polio Syndrome, Limb Girdle Dystrophies and others. Many workshops are organized through ENMC.
Pour en savoir plus : www.enmc.org/default4.html
Muscular Dystrophy Campaign
From the Muscular Dystrophy Campaign,  British Association to combat neuromuscular diseases (the "Muscular Dystrophy Group" is now called "Muscular Dystrophy Campaign"). Large volume of information on 24 neuromuscular diseases with a large number of links. Go to “ fact sheet ” for information on each disease. For patients or their families and professionals.
Pour en savoir plus : www.muscular-dystrophy.org/
MuscleNET
MuscleNET is a WEB facility, jointly sponsored by Telethon-Italy, the Muscular Dystrophy
Association of Italy (UILDM) and the University of Padua. MuscleNET provides information on neuromuscular disorders, cardiomyopathies and the recent advances of the scientific research on these subjects. Moreover MuscleNET contains a study companion in muscle biology and a set of useful links in this field.
Pour en savoir plus : telethon.bio.unipd.it/
Italian Association for the fight against Muscular Dystrophy) (in Italian, in English, in german)
Aims and projects to promote scientific research and health information on progressive dystrophy using all possible means; to promote and encourage the social integration of disabled people.
A quarterly magazine, the DM, which deals with medical-scientific, legislative and social subjects is on line.
Pour en savoir plus : www.uildm.org
Karolinska Institut
Sweden Karolinska Institut website is a reference for every disease. You can find informations on neuromuscular diseases as well.

USA

OMIM : National Center for Biotechnology Information
The first information tool on genetic diseases. Host site of the American database "On Line Mendelian Inheritance in Man" (OMIM), on-line version of the catalogue of human genes and genetic diseases, revised by Dr V. McKusik and his colleagues at Johns Hopkins University; literature review for each genetic disease. For physicians and scientists.
Pour en savoir plus : www3.ncbi.nlm.nih.gov/Omim/
MDA - USA
Website of the American Muscular Dystrophy Association (MDA); large quantity of updated information on neuromuscular diseases, on the research activities of the Association; very complete Ask the Experts item (questions/responses).
Pour en savoir plus : www.mdausa.org/disease/
Gene Clinics
Website developed by the University of Washington (Seattle); medical-scientific information on the use of genetic tests in diagnosis, management and genetic advice to patients or their families with genetic diseases; for genetics professionals.
Pour en savoir plus : www.geneclinics.org/profiles/
Neuromuscular Diseases Center
A reference website on neuromuscular diseases. Created by Washington University (St. Louis), it is updated regularly and contains a search engine and an index. It contains clinical and genetic information; for professionals.
Pour en savoir plus : www.neuro.wustl.edu/neuromuscular/
NORD : National Organization for Rare Disorders
NORD maintains three searchable databases and an alphabetical index of disease names and provides names of Organizations related to each disease. Scientific news, free booklets for physicians.
Pour en savoir plus : www.rarediseases.org/
NeuroMuscular Research Center, NMRC at Boston University
The mission of the Center is to explore the workings of the Central Nervous System (CNS) and to develop new technologies for assessing the performance the Neuromuscular System. We have expertise in Electromyography, Biomechanics and Motor Control. The NMRC is comprised of over 30 faculty, staff and graduate students.
Pour en savoir plus : nmrc.bu.edu:80

Canada

Muscular Dystrophy Association of Canada (in English and French)
This website provides relevant and current information about causes, symptoms, and treatments for many types of neuromuscular disorders.
Pour en savoir plus : http://www.mdac.ca/

Australia

MDA - Australia .
Website of the American Muscular Dystrophy Association (MDA); large quantity of updated information on neuromuscular diseases, on the research activities of the Association; very complete Ask the Experts item (questions/responses).
Pour en savoir plus : www.mda.org.au/specific/