1. can you introduce yourself?

My name is Bruno Fonteyn. I am active in health law, I basically follow up on clinical research, biobanks and that kind of thing. I have been working for ten years as a lawyer and I was a few years previously a member of the National Council of the order of physicians.

2. Why do you support the project 101 genomes Marfan of the Fondation 101 Génomes ?

For me it is important to participate in the P101GM because I find that the initiatives emanating from patients are probably a little too rare. The constructive initiatives to ensure that the patient is involved in general care but this is often forced and forced, but also in clinical research and in the development of new therapies, it seemed to me to be an extremely constructive initiative.

I think it also contributes to the development and deployment of clinical research. It is a constructive aid to researchers for research to develop and for the benefit of all.

3. concretely, how can everyone contribute in relation to their field? We have scientists, lawyers, how do they help each other?

Practically, and I think the P101GM is a bit of a demonstration, things have been so specialized that the contribution of all has become crucial.

Obviously, the researchers are in the front line but they cannot work without resources and the resource, it is necessarily the patient who gives it. The patient takes a very special dimension in a genomic context, in the sense that the patient is you and it is me, it is everyone. By searching for its genetic variants, everyone, whether to control the validity of the data or to control the mutation that would be pathogenicity, is likely to participate in reality. And that is what is interesting, that is to say that there is room for everyone certainly in this type of research and it even participates in a process somewhere a little citizen that to be active in this type of research.

The place it is there for everyone, because it is obviously, and it is central, the researchers, we even see that in the researchers it is extremely extensive since there are researchers doctors who practice cardiology, ophthalmology, the researcher Statistician, a pure mathematician who can control whether one makes wrong or good road in the advance of research, one has the pure geneticist researcher who makes the parallel between mathematics and clinical medicine, but there is also all the necessary support lawyers, communicants, people who are looking for adequate funding, etc. who are so many people who are needed to put a more global project into music than just one pure clinical research.

A project that will also be able to make small ones afterwards because in reality, what we are aiming at here is to take Marfan as a pilot but to be able to reproduce this approach elsewhere for a whole bunch of other realities and singularly for research in rare diseases that are undoubtedly the poor parents of research today having regard to the lack of potential economic benefits that this kind of development entails.

4. What are your expectations in relation to the project 101 genomes Marfan?

What would be extraordinary is that Marfan is this seed for a general platform on which a whole series of people could be plugger with this cooperative, collaborative side where everyone advances in the same direction. This side is obviously extremely captivating. A second aspect should not be overlooked, the patient's underlying initiative. A patient who participates, it deploys and facilitates of course the task of the researcher but it also has an educative virtue, the patient is a voice carrier necessary to communicate to other patients the fact that it is open to all. This patient empowerment "which we talk about in medicine a lot today, it is a force vector for an improvement and involvement of people in what concerns them in the foreground. Clinical research obviously, it concerns first and foremost, patients.