President of the ABSM
As President of the Belgian Marfan Syndrome Association (BMSA), I feel it is essential to support the 101 Genomes Project at Fondation 101 Génomes.
It is an innovative project that will allow us to better understand the disease and thus better control it. This better understanding gives a lot of hope in the control and treatment of the disease, both medically and psychologically. Indeed, at the present time, many patients remain with too many unknowns about their disease and its evolution, and sometimes even its identification. And why not hope that Marfan syndrome can be detected even before the first signs of it and dream of being able to treat it genetically.
We can only admire the energy, professionalism and dedication of Romain and Ludivine in this project. They have succeeded in bringing together different European scientists around the same great cause, opening doors, making their project heard with important bodies, raising funds. As a representative of an association, I know the difficulties that this represents and the energy that it requires to remain positive despite the hazards of life. This is also why, on our scale, the Belgian Association of Marfan syndrome supports this project, in particular by opening the doors of this special issue of our newspaper " The heart & the hand ".
MFS
As someone who is affected by Marfan's syndrome, I am like all patients in the hope that one day this syndrome will be better controlled and perhaps even no longer a handicap.
Personally, I would like to understand why the differences in the symptoms of the disease are also important in patients.
My biggest wish is that in the future, patients will be diagnosed more quickly in order to guarantee them better management of their disease and above all a better quality of life and perhaps a therapeutic treatment in order to preserve them from problems of health.
At the moment there are unfortunately too many patients who are not detected in time or properly supported. There are still too many doctors who are not aware of the problems of rare diseases.
Véronique Vrinds
President of the Belgian Association of Marfan syndrome until 2018