THE ITALIAN MOEBIUS SYNDROME ASSOCIATION O.N.L.U.S.

The Italian Moebius Syndrome Association O.n.l.u.s. is a non profit organization founded by parents that came all together will the aim to fight the disease.

The Italian Moebius Syndrome Association O.n.l.u.s. co-operates with other associations in the world who also fight the disease. Several worldwide associations have adapted the same logo (Moebius' rings) particularly as a sign of unity and true co-operation existing between the various associations.

This is essential especially for exchanging news and information necessary to know the "State of Art" of the disease, which means how much people in the world know about the syndrome, the state of research and the possible existing solutions.

In Italy it's very difficult to diagnose the Moebius Syndrome, there is a lack of knowledge of the general aspects and treatments, and the programme for studies and research is limited, if not to say doesn't exist.

The Italian Moebius Syndrome Association's aim is to promote in Italy the development and spreading of scientific research regarding diagnosis and treatments, as well as to improve social health and social work services for the benefit of children affected by Moebius Syndrome and their families, and consequently co-operate progressively with other Associations and Institutes operating in Italy and abroad with an excellant adaptation in the field.

The Italian Moebius Syndrome Association O.n.l.u.s. is proceeding the following way to pursue it's target:

• to fully inform and create interest among doctors and the syndrome communities;
• to promote, finance and support research, cures and possible treatments;
• to promote forming research groups and to convince as many students and researchers as possible to study the syndrome;
• to facilitate exchanging scientific information both nationally and internationally, to sponsor and organize updating courses, conferences, meetings, scholarships;
• to stimulate and organize volontary service activities;
• to give and ask help for hospital operations , treatments, "the stay in hospital or in bed at home", and trips in Italy and abroad to acquire informations ;
• to organize, develop and diffuse a system of communication and information among people affected by Moebius Syndrome and their families, by promoting and organizing conferences, meetings, debates, lessons, and producing publications and spreading news by all ways of communication.

The Italian Moebius Syndrome Association O.n.l.u.s. co-operates with the scientific world in order to examine and develop the knowledge existing abroad regarding researches and cures for Moebius Syndrome. Important contacts have already been made in the last months with doctors and researchers of Institutes abroad.

The first task planned is to locate, define and diffuse the basic aspects among families and doctors so that the syndrome can be correctly diagnoses. Very often due to the fact that there isn't sufficient information about Moebius syndrome the disorder is diagnosed late and/or incorrectly, for example, it's diagnosed as "autism" instead of Moebius for many children affected by Moebius.