European Patients Forum

Three questions to Anders Olauson, Chairman at Agrenska and President of European Patients Forum. Axel and Louise Agren founded the Agrenska Foundation a century ago. On May 26 2014 Agrenska will celebrate the 100 years in the presence of the Swedish Queen.

Agrenska is a National Competence Centre for Rare Diseases, what does that mean?

- It means that we are focusing on what happens to people who get a rare disease when different parts of society are not interacting with each other, nor understanding. For example social service units, schools and even health care will not know what the diagnose implicates.

How do you work with your digital channels?

- The digital environment is becoming increasingly important in all respects. It cannot replace the physical meeting but it informs, maintains the contact and spreads knowledge. Our cooperation with Funka is priceless, it has meant everything in our way of thinking about the development of our website and virtual environments.

Agrenska recently received a donation of 50 million Swedish crowns, congratulations! What will you do with the money?

- Thank you, I call it divine timing! We will build a new house, which will partly replace the old one with new guest rooms. The house will also be used to stimulate and inspire to research development of health, housing and treatments for people with a rare diagnosis.

- We got in contact with the family Olsson and the Sten A Olsson Foundation for Research and Culture who are donating the full amount. The donation would not have been possible without the dialogue that we are having with society; we don’t have any secrets and we report everything we do. We have respectful conversations with the kids and their families. We also have employees with disabilities, it is important to try to practice what you preach.