Several organ systems are affected simultaneously, making the health management of these disorders extremely complex and costly.

The foundation aims at giving both sufferers and their families support with the overall medical management of their disorder, especially with the imaging (radiological), social and psychosomatic aspects.

This is to be achieved on the one hand by building up an information platform in this website, and on the other hand via leisure activities for children with special carers, and intensive advice given to parents and relatives. Because it is in childhood and youth, that the conditions are created for dealing with one's disorder in later life.

Doctors, official authorities and sponsors are to be made aware of the special needs of children and young people suffering from Marfan's Syndrome. This is to be achieved via PR initiatives and in consulting conversations. Those afflicted should receive intensive support so that they are able to participate in life – including active professional life – in good health.

Patients may be referred to an operation replacing the dilated section of their aorta – in full knowledge of their disorder and after having dealt with its aspects, especially with the inherent life-threatening aspects. This elective operation is important, since it results in a marked increase in life expectancy – particularly compared to an emergency operation after a ruptured aneurysm (dissection or rupture).

PR efforts include art exhibitions, performances and concerts. In addition it is planned to involve a patron for the foundation. The foundation is currently being officially established.
Presently, any donations are being managed by trustees on a personal account. On request we would be happy to give banking details. Please address requests by mail to Christian Warzinek or by email to This e-mail address is being protected from spambots. You need JavaScript enabled to view it .