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Institut de Myologie
Intended for researchers, this website presents the activities of the
Institute, its stakeholders, results, publications and news. It also includes
more fundamental scientific information covering the area of Myology.
www.institut-myologie.org
Association Française contre les Myopathies
(French Muscular Dystrophy Association)
The AFM website is intended for patients and their families, for health professionals
and researchers, and also for the general public. Internet users will find comprehensive
information about neuromuscular diseases, a detailed assessment of the current
state of research and regular updates on the latest advances in this field, as
well as forums.
www.afm-france.org
Généthon (Gene Therapies Research and Applications
Center)
Essentially intended for researchers and the Généthon's partners,
this website provides comprehensive information about its research and development
activities and its production and services activities. It includes a presentation
of the research units, the teams, the activities and the results.
www.genethon.org
A selection of general neuromuscular diseases websites.
 France
Association Française contre les Myopathies
(French Muscular Dystrophy Association)
The AFM website is intended for patients and their families, for health professionals
and researchers, and also for the general public. Internet users will find comprehensive
information about neuromuscular diseases, a detailed assessment of the current
state of research and regular updates on the latest advances in this field, as
well as forums.
www.afm-france.org
Orphanet (English, French, German, Italian, Portuguese, Spanish)
A database of rare diseases and orphan drugs, Orphanet contains information about
each disease, about patient organisations, specialised consultations in France
and research programs. Every fortnight, the " Orphanews " newsletter
gives information about the developments of Orphanet and presents a summary of
the latest rare diseases news (science, medicine, politics and organisations).
You can suscribe to this newsletter on the Orphanet 's website.
www.orpha.net
Europe
ENMC (European neuromuscular Center)
(English, French, Italian, Portuguese, Spanish)
Quality information for each disease : national patient organisations, quick descriptions
of the diseases, list of available medicines, etc. Easy-to-read articles on sometimes
complex topics, such as how orphan drugs receive market authorisation in Europe,
or ways for patient organisations to influence the European policy. The forum
is in English only at the moment.
www.enmc.org
Muscular Dystrophy Campaign (English)
The Muscular Dystrophy Campaign is an English organisation whose purpose is to
support research on neuromuscular diseases and patients affected by these diseases.
The website is intended for patients, their families and health professionals.
www.muscular-dystrophy.org
MuscleNET (English)
MuscleNET is sponsored by the Italian Telethon, by the Italian Association for
Muscular Dystrophy (UILDM) and the University of Padova. The MuscleNET website
contains information about neuromuscular diseases, cardiomyopathies and the latest
scientific advances. It also provides many links to other organisations and to
other neuromuscular diseases websites across the world.
http://telethon.bio.unipd.it
Italian Association for the fight against Muscular Dystrophy
(English, German, Italian)
The Association's purpose is to promote scientific research and medical information
on muscular dystrophies and to help persons with a disability live as full citizens.
www.uildm.org
Karolinska Institutet (English)
The Swedish Karolinska Institutet website is a reference for any pathology, including
neuromuscular diseases.
www.mic.ki.se/Diseases/index.html
United-States
OMIM : National Center for Biotechnology Information (English)
The definitive information tool on genetic diseases, it is intended for medical
doctors and researchers.. Host site of the American database " Online Mendelian
Inheritance in Man " (OMIM), online version of the catalogue of human genes
and genetic diseases developed and regularly updated by Dr McKusick and his colleagues
at the Johns Hopkins University ; literature review for each genetic disease.
www3.ncbi.nlm.nih.gov/omim
MDA-USA (English and spanish)
The website of the American Muscular Dystrophy Association (MDA) contains a lot
of updated information about neuromuscular diseases, MDA's research activities
and a very comprehensive question/answer section called " Ask the Experts
".
www.mdausa.org/disease
Gene Tests (English)
Developed by the University of Washington, Seattle, and intended for specialists
in genetics, this website provides information about the use of genetic tests
in diagnosis, management and genetic advice to patients affected by a genetic
disease and their families.
www.geneclinics.org/profiles
Neuromuscular Diseases Center (English)
Intended for health professionals and developed by Washington University, St Louis,
this website is a reference source for neuromuscular diseases. It is regularly
updated and contains a search engine, an index and a lot of clinical and genetic
information.
www.neuro.wustl.edu/neuromuscular
NORD : National Organization for Rare Disorders (English)
The NORD website contains three databases as well as an alphabetical index of
rare diseases. It provides information about rare disease organisations, scientific
news and free brochures for medical doctors.
www.rarediseases.org
Canada
Muscular Dystrophy Canada (English/French)
This website provides relevant and updated information regarding the causes, the
symptoms and the treatments of a few neuromuscular diseases.
www.mdac.ca
Australia
MDA - Australia (English)
www.mda.org.au/specific
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