BROKEN MYTHS: A LOOK OF THE ALBINISM Erasmus Project

Project Title

BROKEN MYTHS: A LOOK OF THE ALBINISM

Project Key Action

This project related with these key action: Cooperation for innovation and the exchange of good practices

Project Action Type

This project related with this action type : Strategic Partnerships for youth

Project Call Year

This project’s Call Year is 2016

Project Topics

This project is related with these Project Topics: Inclusion – equity; Disabilities – special needs; Youth (Participation, Youth Work, Youth Policy)

Project Summary

The life of a young man with albinism is doomed to suffer serious health problems. The most important one is, for sure, the vision problems. People with albinism often suffer medium to high visual impairment, specially in their central vision, dim-light vision and stereoscopic vision.
The visually impairment creates a sense of vulnerability, insecurity and fear on the person with albinism, that the non-albinos rarely are able to understand. For us a person who spends our side is something normal, but for a person with albinism is a diffuse shadow when it is a meter and a half away. A distorted appearance that emerges suddenly into the personal space of the young.
That is why the social ignorance of this reality of people with albinism is one of the higher barriers for their social inclusion. Some years ago we made an Erasmus + KA2 Project for the creation of a Strategic Partnership, which it was focused on creating useful outcomes to be used by young people with albinism themselves. In this finished project we thought we focused on:
– To aware European Society. We want the eropean society knows what involves to be a person with abinism through audiovisual materials. These materials will show the daily life of a young man with albinism in each of the participating countries, as well as differences between them.
– To train youthworker, colleagues and friends about the visual impairment of the persns with albinism, how to interact with them and thus promote the full inclusion of young people with albinism.
The “BROKEN MYTHS: A LOOK OF THE ALBINISM” project was designed by 5 prestigious entities of people with albinism from five European countries (ASSOCIATION ALBA-Spain, Genespoir-France, ALBINIT-Italy, NOAH-Germany and NFFD-Norway) in order to achieve high-impact results among young people with albinism, the professionals who works with them and general society in 20 months through 3 transnational meetings and national meetings.
But this project was important for the partners because in changed their own work metodology. This time the young people with albinism were the real responsibles for the management and implementation, as a strategy to strengthen and empower youth groups of national associations and to boost the youth to undertake their own way. This project answered to their demands and interests, saving them of overprotection suffered by their families and their own organizations.

For that reason, we created a new work method to promote the participation of the young people with albinism. Each association was responsible to make open assemblies of young people to define the project and to prepare the results. Also we made good practices and experience exchanges with other european young people with albinism through virtual mobilities and videoconferences
This project also made a high quality tangible results such as:
– AUDIOVISUAL GUIDE FOR PROFESSIONALS AND VOLUNTEERS WORKING WITH YOUNG PEOPLE WITH ALBINISM: An audiovisual guide for young professionals working with albinism and carried out with the help of the Department of Molecular and Cell Biology of the National Center for Biotechnology. From a realistic and scientific perspective, this guide allow professionals get instead of a young man with albinism and receive an explanation of the consequences of this rare disease.

– DOCUMENTARY-FILM: “BROKEN MYTHS: A LOOK OF THE ALBINISM”: This result aims to european society. In this film, young people with albinism from Spain, Italy, Germany, France and Norway will explain their daily lives and how they overcome the barriers of their rare disease to achieve great success.

– EUROPEAN AWARENESS CAMPAIGN: Glasses that simulate the limited vision of an albino person will be distributed. The users will realize the reality of these people and should share their feelings on social networking sites in a viral campaign.

We sincerely believe that this project has achieved a high impact on society in general and specifically in youth workers who work with young people with albinism, improving inclusion. This project has been another step in the strategic partnership of European Youth with Albinism (AEJEA) and ensures the sustainability of the work of this network in the future. Also it has achieved effective results not only among young people themselves with albinism and their families, but professionals around them and society in general.

EU Grant (Eur)

Funding of the project from EU: 44540 Eur

Project Coordinator

Asociación Alba & Country: ES

Project Partners

• NOAH Albinismus Selbsthilfegruppe
• ALBINIT
• Norsk forening for Albinisme (NFFA)
• Genespoir, Associaton française des albinismes