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décembre 2022

Meet our General Secretary, Deputy General Secretary and Treasurer


On 25-26 November, the EURORDIS-Rare Diseases Europe Board of Directors elected a new Board of Officers.

At the Board meeting and series of elections to the Board of Officers, Geske Wehr, EURORDIS General Secretary, was reelected to her position, while Simona Bellagambi was elected to the newly created role of Deputy General Secretary, to enhance engagement in the different membership networks.

Alain Cornet, meanwhile, will continue to perform his duties as Treasurer, overseeing the budget and procedures of EURORDIS.

In the third edition of our Meet the Board interview series, Geske, Simona and Alain talk about what makes a team successful, and highlight EURORDIS achievements. Simona, Geske and Alain also discuss the importance of diversity and communication.

Interview with Geske Wehr, General Secretary

What makes a team successful?

It’s always about the team members. They have to be open-minded, and they have to be willing to listen. They have to be curious, of course, and they also have to be able to express their ideas.

And all of this has to be in a very honest and transparent way. So the spirit has to be open-minded, and everyone has to be easy within themselves and with the others. And a really successful team is always motivated, so each member has to be motivated to give it his or her best to bring things forward. The team itself has to recognise and appreciate and also take advantage of all the strengths of each member of the team.

What motivates you?

I’m very active in the field of my disease which is Ichthyosis, and this is a rare genetic skin disorder. It’s very visible. When I’m visiting my families and my children, I can see a lot of changes for the better during the last ten years.

But still, there’s a lot to do, because people living with a rare disease, families living with a rare disease, can’t take advantage of all the health and social support other citizens can have. We still need to do a lot, and this is what motivates me every day, again and again.

What makes EURORDIS stand out the most?

Well, for me, EURORDIS is unique.

EURORDIS is the only umbrella organisation that unites all rare disease patients in Europe, and even beyond, giving a very strong voice to them.

Through the findings from Rare Barometer, EURORDIS is even in the position to give a clear statement, and this is something that no other NGO can give to any one of us.

Interview with Simona Bellagambi, Deputy General Secretary

What makes a team successful?

I strongly believe that diversity is what makes a team successful, because all members of the team bring in different perspectives, points of view based on their experience and backgrounds, across countries and across diseases. This is our strength.

What motivates you?

I was initially involved in the rare disease world to help a family member. But then I realised that I could’ve helped so many others, and this is what really has motivated me to do more and more over the past 25 years.

What do you think is the biggest strength of EURORDIS right now?

Each person involved in EURORDIS is a strong believer in its value and mission.

I think that this allows EURORDIS to be very strong advocates at the European level in representing the voice and the needs of all the community across Europe and across diseases.

Interview with Alain Cornet, Treasurer

What do you expect from the new composition of the EURORDIS Board? 

I think the new design of the responsibilities between the Board of Officers and the Board of Directors will really enable us to put more strategic focus in the Board of Directors discussions and to move more of the administrative and technical handling in the Board of Officers, so that we can free up time for the important questions.

That should help us to be more strategic, to progress better on the key projects and to have a small team of people with more technical expertise, as a treasurer, a chair and so on, to focus on those technical matters in the Board of Officers discussions, outside of the Board of Directors discussions.

What are the lessons you’ve learned from growing and supporting movements? 

There is one lesson which I’ve learned in those, and that is extremely important, it is the power of ‘and’.

In many of the organisations we are confronted with conflicts of priorities. ‘We would like to do this, BUT we have that issue’. ‘We would like to do that BUT’, and removing the ‘but’ and replacing it with ‘and’, changes the way we manage. ‘Oh we’d like to do this, and we have limited means, so how do we do it?’

I think that’s a key learning which I’ve got in so many organisations and that maybe can help some of our members get over the challenge. Whenever you have that, replace it by ‘and’, and then you’ll progress much further.

What have been the biggest challenges you’ve faced so far?

EURORDIS is in an incredible growth phase.

Over the past years, we’ve got more staff, more projects, a lot more to do. And, the key challenge for EURORDIS is now, I believe, to stay very connected with our community, to avoid to become, as we grow, more administrative, and to lose contact with the reality, the day-to-day realities.

That’s for me the key challenge that we need to go through. How do we establish a family culture? How do we maintain the family culture which we’ve got over the past years with the growth of the organisation, so that we remain connected and not administrative?

Read more interviews from our Meet the Board interview series.