Why and how Association was created

In May 1993, we, RNDr. Mária Dušinská, CSc. and RNDr. Roman Dušinský, CSc. founded the Slovak Marfan Association. A few years before, the disease occurred in our family and doctors stated various and often contradictory, even incorrect information. Insufficient awareness of Marfan's syndrome in physicians and patients was the main reason to create the Association. We are both professional geneticists, but we have only gained up-to-date knowledge about the disease from scientific publications that have been sent us from some world's leading experts. I wrote them letters and asked for advice. The Internet was not yet.

We found out that there is a network of national Marfan organizations in Europe (at that time 12), so we considered to do something similar in Slovakia. However, legislation at the end of the 1980s did not enable this. Later, encouraged by correspondence with Diana Rust, long-time president of the British Marfan Association and at that time coordinator of the European Network, we decided to set up the Slovak Association. At the same time, we asked the doctors – specialists for help. Doc. MUDr. Jozef Mašura, CSc. and Doc. MUDr. Michal Ondrejčak, CSc. willingly helped us in establishing our association and they are still active members of the committee.

The inaugural meeting of the Slovak Association was held on May 31, 1993 in Bratislava. It passed the approval of the Articles of Association, elected a temporary three-member executive committee composed of: MUDr. Jozef Mašura, CSc., Doc. MUDr. Michal Ondrejčak, CSc., RNDr. Mária Dušinská, CSc. The auditing board was MUDr. Forman, CSc., Jozef Simko, Ing. Peter Kothaj.
The general Assembly was held on April 9, 1994 in Dudince. The President of the Association was elected Dr. Mária Dušinská and Executive Committee - Dr.R. Dušinský, CSc., Dr. J. Mašura, CSc., Dr. M. Ondrejčak, CSc., A. Lukovičová, D. Nitrayová.

The first our activities were focused on finding patients and preparing a booklet with basic information about the disease. In October 1994 in Dudince again we organized a second meeting of the members of the Association connected with rehabilitation and lectures.

I created the first website of the Association at the end of 2000 with help of my son Marian.

Roman Dušinský

On the occasion of the 20th anniversary of Association we prepared the presentation. 

It contains a summary of events and photos that happened between 1993 and 2013.