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“Youth with albinism empowerment! Our voice in the pillars of society”
Start date: Jan 1, 2016, End date: Jan 31, 2017 PROJECT  FINISHED 

A young albino must face not only the obstacles arising from their disease, but also to those of a young man who has to build its future as a person and as an active citizen.Youth is not only the transition between childhood and adulthood, but this is the time in which he must build their own opinion and to enforce it, and learn to objectively hear the arguments of the rest. The views of young people with albinism are essential for them to be participants in their own future, to develop their skills and for society to consider all persons with special needs.The Initiative "Youth with albinism empowerment! Our voice in the pillars of society " seeks to create a structured dialogue with major political actors, as well as technical specialists, in the four basic pillars of society: politics, school (formal education), family (the informal education) and health.This project aims to create a debate among young people with albinism and policymakers in this field so for that young people with special needs be empowered, to become active citizens and take a leading role in making laws that affect them. Not only through national and international policy proposals on youth, education and health but in a direct way, promoting changes in their immediate environment and within their schools, family responsibilities and alongside doctors who treat them.It aims to create a purposeful debate among policy makers, youth experts, representatives of public authorities and young people themselves based on the personal experiences of these, but also on a rigorous previous study with sociologists and psychologists experts. This research will involve an analysis of the real situation of young man with albinism regarding education, family situation, health and social or political participation through evidence collection, analysis and peer learning in collaboration with various associations of people with albinism across Europe as GENESPOIR, ALBINIT o ALBINISM FELLOWSHIP, among others. This will be the fundamental basis for future discussions and proposals that will be made to political authorities, technicians and families."Youth with albinism empowerment! Our voice in the pillars of society " will be held in May 2016 and will last 13 months and it will bring together the study of situation, a previous meeting for evaluating the technical study of youth and a big meeting of three days in Valencia where 30 young people from the ALBA Association will meet with national, regional and local policy makers, youth technicians and families. Through various lectures, presentations and dynamics where, through a non-formal and participatory approach, young people with albinism will take center stage and try to build a more inclusive society with people with albinism. This meeting will involve the ONCE collaborating not only with the transfer of adapted spaces and equipment, but in the meeting as an institution of great importance in our country. All activities of this project will seek to achieve two tangible results: The study about Youth with Albinism into Society and the Political Proposals Guide for the Empowerment of People with Albinism. But it is also a priority aim to develop the skills of the young participants through non-formal education and a mechanism for open, free and democratic participation.We hope that in the short term we will be able to promote new inclusive policy initiatives for people with disabilities, particularly people with albinism, and promote the involvement of young people with health problems in democratic mechanisms contributing to its creation as European citizens, which is why a few months later a second single day meeting among young albinos, policy makers and experts will be conducted to assess the degree of implementation of the proposals made, update the study on each of the pillars of society and agree to all what steps to take if no progress has been made.In the longer term we aim that young people with albinism become reference persons to reach positions where they can promote education, health and even family environments adapted to people with this rare disease.

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