On 1 April 2017, representatives from "Albinism-Europe" (European Network of Patient Associations with Albinism) met face-to-face in Valencia to discuss common issues affecting European associations and to plan a common strategy Increase the presence and representation of albinism at European level.
The meeting had the following representatives: Antoine Gliksohn representative of Genespoir - French Association of Albinism; Mónica Puerto, Juan Carlos Yuste, Ana Yturralde and Enrique Puig representatives of ALBA - Association of People with Albinism; Emanuele Regalini and Marzio-Glauco Ghezzi representatives of ALBINIT - Italian Association of People with Albinism; Marie Schack representative of DFFA - Danish Association of People with Albinism; Kjeld Christian Fjeldvig and Ingunn Engebretsen representatives of NFFA - Norwegian Association of People with Albinism, through Skype, Barbara Spaeth representative of NOHA - German Association of Albinism and finally also Skype, Kaisa Kullaa representative of the Finnish Albinism Association.
Some of the most important issues addressed at the meeting are as follows.
- The organization, agenda and funding of the 4th European Day of Albinism (4EDA) to be held from 7 to 10 March in Oslo (NORWAY). Topics on 3YPA were also discussed together with the 4EDA.
- Extend "Albinism-Europe" with contacts received from other European countries that have not yet established a local association but are already organizing.
- The attendance of representatives "Albinism-Europe" to a European conference of health professionals such as EPOS (European Pediatric Ophthalmological Society) in Oxford and ESA (European Strabismological Association) in Porto
- The creation of a specific website for - "Albinism-Europe" European network of patient associations with albinism - using the domain albinism.eu
- The steps to be taken to create the European federation of associations of patients with albinism.
