President of ABSM

As President of the Belgian Marfan Syndrome Association (ABSM), I feel it’s vital to support the 101 Genomes Foundation’s 101 Genomes Project.

It’s an innovative project that will enable us to gain a better understanding of the disease, and thus control it more effectively. This better understanding gives us great hope in the control and treatment of this disease, both medically and psychologically. At present, many patients are left with too many unknowns about their disease and its evolution, and sometimes even about how to identify it. And why not hope that Marfan syndrome can be detected even before its first signs, and dream of being able to treat it genetically.

We can only admire Romain and Ludivine’s energy, professionalism and dedication to this project. They have succeeded in uniting a number of European scientists around a common cause, opening doors, making their project heard by important bodies and raising funds. As a representative of an association, I know the difficulties involved and the energy it takes to remain positive despite life’s ups and downs. That’s also why the Belgian Marfan Syndrome Association is supporting this project in our own way, in particular by opening the doors of this special issue of our journal “Marfan Syndrome”. Le Cœur & la Main 

MFS

As a person affected by Marfan syndrome, I am like all patients in the hope that one day this syndrome will be better controlled and perhaps no longer be a handicap.

Personally, I’d like to understand why the differences in disease symptoms are so significant among patients.

My greatest wish is that, in the future, patients will be diagnosed more quickly, so that they can better manage their disease and, above all, enjoy a better quality of life, and perhaps receive therapeutic treatment to help them avoid health problems in the future.

At present, unfortunately, there are still too many patients who are not detected in time or not properly managed. There are still too many doctors who are not aware of the problems of rare diseases.

Véronique Vrinds
President of the Belgian Marfan Syndrome Association until 2018