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Evelin Ilves at the reception of the 10th anniversary of the Agrenska Foundation at the Estonian Embassy in Stockholm, 19 March 2013

19.03.2013

Thank you, Anders, for your kind words.
I'm very happy to be here with you in our beautiful embassy.

Ten years ago when Eesti Agrenska was born, knowledge about rare diseases was quite insufficient in our society. I remember the day in 2007 when Queen Silvia and I visited Eesti Agrenska at Tammistu, outside of Tartu, in Southern Estonia, when we put the time capsule in the cornerstone of the main building, the one we are now planning to finish restoring.

It was a great, memorable day. The sky was grey and seemed to be covered at least a kilometre thick with clouds, it was raining cats and dogs and there was mud everywhere. But the people – the children with the rare diseases and their parents and friends, the doctors and therapists and donators – everyone was smiling. The boy's choir was singing in the constant rain in full voice... And our hearts and eyes were smiling, too.

As a medical doctor I knew about rare diseases but what I didn't know was the importance of non-medical support schemes, services and sometimes just contact between families with children with similar diagnoses. It surprised me that this non-medical aid could sometimes be even more important to them than expensive treatment.

I was so impressed with what I learned from Queen Silvia, the patron of Agrenska Sweden, and also from the professionals and donators of Eesti Agrenska. I was fully convinced that day that I should become a patron of Eesti Agrenska in order to encourage and help these very special people.

I also hope that the people and the companies who have donated their time, goods and money will continue their work to help children with rare diseases in Estonia.

As a patron of Eesti Agrenska I have a great opportunity to thank you for everything you have done or will do in future to improve the lives of the families with these very special children. And I'm also very happy to be part of our 10th anniversary today and in August this year.

Thank you once again!