Eurordis - Rare Disease Europe

In Conversation: Virginie Bros-Facer and Avril Daly on the future at EURORDIS

EURORDIS President Avril Daly, and CEO Virginie Bros-Facer, recently sat down to catch up on how the CEO leadership transition has been for them and what they would like to achieve going forward.

Virginie discusses how her first month at EURORDIS has been, and shares her immediate priorities for the upcoming months. She shares her message for EURORDIS member organisations and Europe’s rare disease community.

Avril: I am delighted to be joined today by Virginie Bros-Facer, who has just very recently started her role as CEO of EURORDIS. And I have some burning questions for you today, Virginie, so thank you so much for joining.

Virginie: Thank you very much for having me, Avril.

Avril: Now you’re in the role and you’ve been in the role for a month, so how has that first month been for you?

Virginie: The first month has been very intense, I’ve been meeting all the colleagues in Paris, Brussels and Barcelona. It was really important for me to try and learn about what everybody does – their remits and their responsibilities – because the scope of our activities is very vast, and there is a huge amount to learn. It has been very inspiring. I am also very impressed by their competency, dedication and commitment: it is truly humbling and was a big source of motivation for me right from the start.

Avril: Yes, absolutely. And I suppose the staff now have had the opportunity to get to know you. And of course, we have staff in three locations: in Paris, in Brussels and Barcelona, so it’s great to have had that opportunity. But for our members and our various stakeholders within the rare disease community, what would your message to them be?

Virginie: I would like to say that I’m here for them. I had the chance of meeting many of our members when I was scientific director for EURORDIS before, and I really do get what it means to live with a rare disease from my own family’s experience. I’m keen to learn about their own experience, relate to that and to really better understand their expectations, needs and priorities to make sure that we can improve the quality of life of rare disease patients together, and work together to make that difference.

Avril: Great, you want to work together, be collaborative. So can you describe your leadership style in three words?

Virginie: I would like to pursue an approach that is both collaborative and inclusive, and really be coherent in everything that I do, and to pursue that approach throughout, and work together with the team at EURORDIS, but also with the wider rare disease community.

Avril: Yes, and it’s as you say, it’s such a broad and vast community. But what would be your immediate priorities and goals as you enter into this role now?

Virginie: So first, I think the important thing for me is really to grasp all the aspects of our organisation in the different areas of action and to be on top of our campaign for the European Parliament elections that are coming up, calling for a European plan for rare diseases, work on the revision of the pharmaceutical legislation, but also on the implementation of the European Health Data Space and the legislation, as well as the Health Technology Assessment legislation.

I want to be ready to advocate for earlier and faster access to diagnosis through newborn screening, for example, but also for equity in accessing the existing new technologies and knowledge that we have for diagnosis today. I feel privileged to come in at a time where integration of the European Reference Networks into national healthcare systems is a shared priorities across the member states and partners.

It’s also important for me to keep developing the work around social policies, aiming for a more holistic approach to person needs, integrating medical and social care. I also believe that the mental health initiative is a key area which we have recently started and will keep working on.

Avril: Well, thank you very much for for spending some time with me today to go through some of these burning questions that I know a lot of people have for you as our new CEO at EURORDIS and we look forward very much to working with you and pursuing our shared goals!