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

• Motor Function Measure (MFM) (in french and in english)

Motor Function Measure (MFM) is a quantitative scale that makes it possible to measure the functional motor abilities of a person affected by a neuromuscular disease. Whatever the diagnosis and the extent of motor deficiencies, MFM allows us to :
> specify the symptomatology and the evolution of neuromuscular diseasespréciser,
> objectivize the repercussion of the therapeutic measures
direct the rehabilitation and adaptation measures,
> facilitate communication between the various persons in charge of care,
> select homogeneous groups of patients in view of therapeutic trials.
MFM is to date the only validated and published function measurement scale usable in the majority of neuromuscular diseases, among patients from 6 to 60 years old.
• Further information : www.mfm-nmd.org/home.aspx

• 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.
• Further information : www.orpha.net

• Institut de Myologie (in french and in english)

The Institute of Myology has set the following missions:
> to bring research, clinical activities to bring research, clinical activities and teaching together in the same place
> to gather performing means of investigation for diagnosis and care
> to create a centre of expertise and a point of reference on muscle and muscle diseases
> to set up coordinated clinical research programs
> to participate in the development of new therapeutics
> to provide families with adapted reception, support and medical expertise
> to train and inform in order to increase understanding and public awareness of these diseases.
• Further information : http://www.institut-myologie.org/anglais/index.php

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.
• Further information : www.enmc.org

• 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.
• Further information : 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.
• Further information : http://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.
• Further information : www.uildm.org

• Karolinska Institut

Sweden Karolinska Institut website is a reference for every disease. You can find informations on neuromuscular diseases as well.
• Further information : http://www.mic.ki.se/Diseases/index.html

USA

• 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).
• Further information : 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.
• Further information : 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.
• Further information : 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.
• Further information : 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.
• Further information : www.nmrc.bu.edu:80

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).
• Further information : www.mda.org.au