25th to 26th of October 2014, 52 persons where gathered at The Danish Blind Unions center, Fuglsangcentret, in Fredericia. 48 of this was Danish aniridia patients and their families. 3 came from Norway, 2 from Finland and 1 from Sweden. These were all board-representatives from their national aniridia organizations.
Susanne Kjær Christensen, known from the aniridia community as the Danish representative in Aniridia Europe, started the conference on Saturday the 25th with a presentation of the participants and the program for the weekend.
The first day of the conference, the headline was “knowledge is power and we are the expert”.
The focus was on knowledge about aniridia and building awareness around empowerment.
Kirsten Baggesen, ph.d., from the eye section at Aalborg University Hospital held a lecture about what aniridia is, which challenges this gives in everyday-life, seen in a medical perspective.
Then Sven Fandru from Rare Diseases Denmark followed up with a lecture about the importance of building a network for persons with rare diseases. He also spoke about what is important just now in this field in Denmark, in the Nordic countries and in Europe.
Finally, Hilde R. Hansen and Sølvi J. Ørstenvik from Aniridia Norway, shared their experiences with building a network for people with aniridia in Norway, the importance of such a network and what was the success-criteria.
On Sunday the headline was: “The more we are, the stronger we become”.
Jesper Hjortdal, professor, dr. med. at the eye-clinic at Aarhus University hospital, held a lecture about the importance of scientific work on rare diseases. He also lectured about the newest findings on aniridia and how we can work to get better and more focus on aniridia.
Then Hilde R. Hansen and Sølvi J. ørstenvik spoke about what happens in the Nordic, in Europe and the world on the aniridia field, and how this influence us.
In the last session on Sunday we had a workshop. The participants was divided in groups where they should discuss the possibilities of building an aniridia network in Denmark; What is most important to start with, what are the strengths, weaknesses challenges and opportunities.
The groups had very good discussions and many challenges and opportunities was looked upon.
The workshop was summarized communally. It was decided that a working group should look upon the possibility of building an aniridia network in Denmark. 9 persons was chosen to do this important work. There are many challenges, but we who were there, believe that they will succeed.
We will wait for the next report from Denmark and hope that we soon can wish them welcome in the European aniridia family.
Sølvi J. Ørstenvik