Where can I get more information?
Since the alliance itself does not have any office or such, for further information please contact the national organizations.
Austria
Interessengemeinschaft Arthrogryposis (IGA) e.V.
Denmark
Landsforeningen for armdefekte/bendefekte og AMC
France
Alliance Arthrogrypose
Germany
Interessengemeinschaft Arthrogryposis (IGA) e.V.
Norway
Landsforeningen for AMC
Sweden
AMC föreningen i Sverige
Switzerland
Interessengemeinschaft Arthrogryposis (IGA) e.V.
United Kingdom
The Arthrogryposis Group (TAG)
Who are we?
The European Alliance for Arthrogryposis is an informal working group of self-support groups for arthrogryposis multiplex congenita throughout Europe and with contacts to further groups beyond.
While most activities of the member organizations are still national, the alliance aims at enhancing international communication and exchange of information. At this point, common projects still have to be defined. But obviously, a joint effort in gathering results of medical research and encouraging further research projects can be beneficial.
The organizations listed already share the idea of the European alliance.
You'd like to join the alliance?
Contact us at:
info@arthrogryposis-alliance.eu
What is arthrogryposis?
Arthrogryposis multiplex congenita, or short AMC, is a term used to describe a baby born with multiple joint contractures (fixed and stiff joints) and covers a wide range of conditions. It is not a medical diagnosis but a description of a limitation of movement of two or more joints in different areas of the body. The joint may be fixed in either a flexed (bent) or extended (straight) position.
The clinical appearance can be extremely variable. There are several different conditions in which multiple joint contractures may be present and that have been identified as arthrogryposis. AMC occurs in about one in every 3000 to 5000 live births.
The exact cause is unknown, although several mechanisms have been suggested. The principal cause is believed to be decreased fetal movements. Research has shown that anything that prevents normal joint movement before birth can result in joint contractures. In some cases there are also genetic causes.
Also see the Wikipedia article on arthrogryposis.