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November 2022

Meet the Board: Our President & Immediate Past President


Meet the Board: Avril Daly & Terkel Andersen

On 25-26 November 2022, EURORDIS-Rare Diseases Europe elected Avril Daly as the new President of EURORDIS-Rare Diseases Europe.

Having served as our Vice-President and Acting President since June 2022, Avril succeeds Terkel Andersen as President. 

After nearly 20 years as our President, Terkel Andersen has stepped down, for health reasons, to continue supporting EURORDIS from the new position of Immediate Past President on our Board of Directors. 

In the first edition of our Meet the Board interview series, Avril and Terkel talk to us about the importance of EURORDIS and its leadership reflecting the broad diversity of our rare disease community, what inspired them to get involved with EURORDIS, and what they hope their legacies at the organisation will be. 

Interview with Avril Daly, President

What does diversity mean to you?

I think diversity is really, really important, because when you consider the fact that we’re talking about over 6000 rare diseases, that’s a diverse community.

The community itself embodies diversity.

But I think from a governance perspective, it’s really important that we have very good representation on our board, not only of the conditions that people are affected by and live with, and there are many, obviously, but also from a geographical perspective, because the work that we are doing at EURORDIS is policy based.

We are working with the Commission and the various European institutions. And of course, each country is different. You know, each country has a different structure, and what is important to one country may be less so to another, and maybe one country can learn from what another has been through.

But what’s also really critical is to have more diversity in age profiles as well, because there’s a lot happening, particularly in this new environment that we’re all living in. From a communications perspective, there’s absolutely no doubt that there is a generation emerging that really understands how to communicate now across the different platforms and how to use them.

As a community, we have a vast amount of people that are affected by rare diseases, but, you know, there are small individual populations, and how to connect those is really important.

And I think diversity and approach, age, culture are really important for us to grow and to learn.

What inspired you to choose this path to become President?

When I started volunteering with EURORDIS about 20 years ago, being on the governance of the organisation didn’t occur to me.
 
I was really working as a volunteer for my national organisation, Rare Diseases Ireland, and I started to come to various meetings over the years, and I could see very clearly the work that was happening, the breadth of the work, and I was just really inspired. I was inspired by the people and the focus that they all had to work in collaboration, even though their issues were different, and how they could come together to try to effect change for everybody.

I was elected to the Board in 2009, and I started to see things from a strategic perspective and was there at a time where the national plans were starting to be developed. I could see all the different strands, all different stakeholders that needed to be involved in that.

I became the Vice President in 2012, and since then, really, there has been more collaboration with the Board of Directors, with the Board of Officers, with the team at EURORDIS, and of course, the volunteers, and learning more and more about the organisation.
 
What I really liked working on was the strategic planning and the strategic objectives.

I wouldn’t say that I was inspired to become President. I was very honoured to be asked just recently to go forward for President, and it was an extremely humbling experience for me, but also something that I had to give a lot of consideration to, because I will be taking over from Terkel Andersen, who has been President for over 20 years, and whose leadership has been incredibly important to me – not only a person on the Board, but a patient living with a rare disease.

Terkel, as President, was an inspiring figure to me, and continues to be so, and no doubt he will be well into the future.

In ten years’ time, what would you like to be about you as President?

I think for me, it’s not about being remembered as a person, but I think ensuring that there is progress; that we’re moving towards our strategic objectives.

Right now, working on an action plan for rare diseases is incredibly important, ensuring that the recommendations that have come from the Rare 2030 foresight study are enacted, and supporting wherever possible, the development of the European Reference Networks [ERNs], which are still very much in their infancy.

I fundamentally believe that ERNs are the future of connecting people living with specific rare diseases themselves, and of networking across Europe to ensure innovation of thought, innovation in care, diagnosis, and, ultimately, treatment.

And also to create that idea of research and innovation, as being not just the lab-based research, but that whole continuum from bench to bedside, what it means for people living with rare diseases and all the infrastructures that are needed to support that, to bring a better, more equitable quality of life to people living with these diseases.

I think that’s something that I would like to see and as President, would like to contribute to. To be remembered as a collective, I think is what’s important to make the difference.

Interview with Terkel Andersen, Immediate Past President

What has most impressed you about the work of the rare disease community over your 20 years as President of EURORDIS?

I think what really impressed me most about the rare disease community is the fact that people are working with such solidarity – not only between peers of their own disease group but actually amongst disease groups sharing the same experience of really not being understood by society around them.

They do so with this kind of resilience, actually not accepting destiny where they would be excluded from the kind of help and support that you would normally expect in a welfare society, but that you would actually insist on. [They do so by] driving change and doing it with a very creative spirit: bringing innovation to the fore and inspiring other people, also from other stakeholders, to take part in the evolution towards a situation where rare diseases will be fully integrated into all healthcare systems and actually also be given the kind of support that you would expect with other disabilities, more common disabilities.

What do you hope will be your greatest legacy at EURORDIS?

I hope that EURORDIS remains rooted in the community of people living with rare disease, that it takes the inspiration and ethos from people who live with a rare disease. Keeping their needs as the sole reason and driver of EURORDIS’ present and future initiatives will preserve its legitimacy, helping it remain that authentic and trustworthy voice and partner in the eyes of all stakeholders.

EURORDIS must continue to be a frontrunner in shaping European health policies. I am convinced that the solutions that we bring forward can be applied in a broader development of European public health policy. And by that, we may be contributing to reducing the inequalities that we see among European member states but also inside member states.

Also in terms of access to care, and in the involvement and integration of health and social policies, I would like see us all ensure a comprehensive approach to the needs of people living with a disease, whether it be a rare disease or a more common disease.