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December 2022

Meet the Board: Our Vice-Presidents


On 25-26 November 2022, EURORDIS-Rare Diseases Europe elected Maria Montefusco and Dorica Dan as our Vice-Presidents.

Maria Montefusco has sat on our Board since 2020, having been a member of our Social Policy Action Group (formerly Social Policy Advisory Group) since 2015. She is also the Chair of Rare Diseases Sweden, a senior advisor for disability issues at the Nordic Welfare Centre, and the secretary at the Nordic Council of Ministers’ disability council.

Dorica Dan was first elected to our Board of Officers in 2011, having been a member of our Board of Directors since 2007. Dorica is president of both the Romanian Prader Willi Association and the Romanian National Alliance for Rare Diseases. She is also an expert in rare cancers, with nearly two decades of experience in rare disease advocacy.

In the second edition of our Meet the Board interview series, Maria and Dorica speak about their ambitions for the future of EURORDIS upon their election as our Vice Presidents, and they share with us what change they believe will be fundamental to our organisations growth. Touching on personal motivations on their work at EURORDIS, our new Vice Presidents also discuss the value of working as a team, and making sure teams both have and embrace diversity.

Interview with Dorica Dan, Vice-President

What will be your main focuses as Vice-President?

My main focus will be to continue to work on integrated care, trying to bring different stakeholders that have an interest in integrated care – not only medical and social, but also educational and technological.

I really believe that integrated care is the future – that it is a key element for the future of health for patients with rare diseases. I will also be concentrated on transferring best practices from ERNs into the national healthcare system.

The biggest challenge was at a national level because we opened a centre – a Pilot Reference Centre for Rare Diseases – in 2011. And the biggest challenge was to ensure the sustainability of this centre. And the way we approached this was to have funding from the local authorities.

To combine the local strategy with the national strategy and the international strategy, and the European strategy, of course, we must integrate our needs in all these pieces of strategies for health in Romania and at the EU level.

What motivates you?

I’m motivated by my family because we are affected by rare diseases in our family. And I’m also motivated every day by the children in the day-care centre that we have in Romania, because they fight for their life, and they are very strong and good fighters. And I love their smile. That motivates me every day.

What is the one thing you would change about EURORDIS?

I think we have to focus more on training our organisations – members of EURORDIS – because in order to continue to be strong as a coalition at the European level, we need very strong members.

Interview with Maria Montefusco, Vice-President

What makes a team successful?

For me, a successful team is a team that consists of different individuals and characters, and people who bring in different skills and backgrounds to contribute with.

But at the same time, we need to go in the same direction and have the same goals and move forward in a group way, to walk forward at the same pace, singing the same song, to reach the goal that we are aiming for.

What is your leadership philosophy?

My leadership philosophy would be about listening and listening to the people who will be concerned about the things that we work with and spending more time listening than leading and make sure that when we lead, we should have all the perspectives and the people who we lead in front of us.

What makes EURORDIS stand out the most?

I think what stands out with EURORDIS is that we are so many different organisations and different people represented by the organisation. EURORDIS represents a heterogeneity, a diversity that is quite impressive. At the same time, we share some fundamental aspects of living with a rare disease and the challenges that we meet. And with that platform, it’s a very strong group that EURORDIS represents.

What will be your main focuses as Vice-President?

I think our main focus will be about finding a method in the form to stay strong and stay many, and staying together, with this new kind of leadership and organisation in a world that is changing. So there are many new things to adapt to, and to find our way through. I think that will be the main focus.