From 7th to 10th of March 2018 the 4th EDA (European Days of Albinism) and the 3rd YPA (Meeting of Young People with Albinism) took place in Norway, hosted by the Norwegian Albinism Association, NFFA. Numerous scientists and experts in the field of albinism from all over the world, representatives from different European associations for people with albinism and over 30 young members of those associations attended this international conference dedicated to albinism.
The conference venue and official hotel was located in the Hurdal Vision and Activity Center (Hurdalsenteret) run by the Norwegian association of blind people.
The activities contained the following parallel meetings: 1) a scientific conference with top experts on albinism from all over the world. 2) a working meeting of Albinism Europe with representatives from 10 different European albinism associations. 3) the 3rd meeting of Young People with Albinism (YPA).
The Scientific Conference offered the different experts in the field of albinism a variety of topics for discussion and exchanging of experience. You can find the scientific program by clicking on the following link (SC program).
The representatives of associations that make up Albinism Europe used the face-to-face time to discuss the future structure of the organisation and ways of working together. Common activities and goals were identified during this time together.
Sharing of experience between the young people with albinism and strategies for coping with this condition were major topics for the YPA session. The young people with albinism had enough time to build a strong team and form friendships with others from all over Europe. They enjoyed their time together through different exciting activities, indoor and outdoor.
Two highlights closed the event. There was a special presentation by Ikponwosa Ero, the UN Independent Expert on the enjoyment of human rights by persons with albinism, and from Mike McGowan, Executive Director of NOAH (National Organization for Albinism and Hypopigmentation) in the USA.
IK Ero talked about her work and wanted to motivate people to share with her their experience in the field of albinism regarding human rights. Of course albinism in Africa is a very important part of her work, but issues around human rights of people with albinism are equally important in Europe.
Mike McGowan shared his thoughts about living with albinism and working in a patients' organization. His major message for everyone acting as a point of contact for people with albinism is: “We need to be there.”
As well as the official activities there was plenty of social time for all participants of this big event to enjoy their time together through all the great activities the venue offered. All participants were able to enjoy watching three different and very well-done short films which explored albinism in different ways.
After a welcome joint session run by Edel Krøll (4th EDA Coordinator for NFFA), Kjeld Christian Fjeldvig (President of NFFA), Antoine Gliksohn (Albinism Europe Coordinator), Benoît Arveiler & Lluis Montoliu (Albinism Europe Scientific Committee co-Chairs) the parallel sessions started.
Associations and YPA participants shared a common presentation before the individual working sessions while the scientists started their conferences.