English summary

The National Association for Marfan Syndrome in Denmark was established in 1991. We have today as members about 140 persons with Marfan Syndrome.

The Danish Association arranges 2 weekend courses every year. Our courses are a mix of professional contents and social gathering. There has for example been a course based on the theme "Eyesight", another with "the Body" and about "the pains" etc. We arrange courses especially for youth and for children, their parents and grandparents. Furthermore we have three times arranged 1 weekly folk high school course.

In 1996 we celebrated the 100 year of the first account of Marfan Syndrome by having a conference at the Parliament building in Copenhagen. There were 225 participants, of whom 130 were professionals. There were 8 professional introductions followed by a panel debate concerning the centralisation and coordination of the treatment of Marfan Syndrome in Denmark. This day was a big success for the Danish Association. In 2001 we celebrated our 10 year jubilee in the same way.

A professional committee is attached to the national Association. The committee consists of an Eye specialist, a Rheumatologist, a Cardiologist and a Paediatrician. The national board and the committee meet once a year.

In 1997 The National Association employed a social worker for persons with Marfan Syndrome and their relatives.

We have published a lot of brochures and professional articles.

On request from the members it is possible to:

Get advice on social, economic and general conditions concerning Marfan Syndrome.
Get "Ambulance-service" for new diagnosed and members, who's situation has acutely grown worse.
Help the member by co-ordinating the co-operators within the social- and health service.
Provide advice and guidance for the municipality, county and health service in concrete or general problems concerning Marfan Syndrome.

The guidance is offered by telephone, visits in the home of the member or at the hospital. Also by participations at meetings with the members co-operators within the social-health-or school service, depending on members wish.

The Danish National Association for Marfan Syndrome

Chairman: Lottem Hybel
Ourøgade 12, 2.tv
2100 København Ø
Denmark
Tlf. (+45) 39 27 94 99
E-mail