“Building of new mechanisms for self-help for affected people of Aniridia”
initiative of the Association Aniridia Bulgaria with official partner Association Aniridia Norway.
The project is funded under the Program for support NGOs in Bulgaria under the Financial Mechanism of the European Economic Area 2009 – 2014.
The mission of the Association Aniridia Bulgaria is to bring together those affected by the disease Aniridia families and serve their interests. That is why, at the beginning of 2013, the founders of the organization developed project on thematic field “Social integration and empowerment of vulnerable groups” and thematic priority “Empowerment of vulnerable groups”
In the project are included the following activities:
- Exchange of experience with NGO partners from Norway, through development and distribution of a Manual of good practice.
- Organization and realization of two specialized training (in Sofia and Varna city), featuring expert speakers
- Organization and realization of five information seminars throughout the country in order to familiarize the public and stakeholders with the disease.
- Create a Registry of affected persons with Aniridia in Bulgaria .
- Providing specialized equipment and inventories that will help for:
- daily tracking the disease status at home, mainly for children;
- specialized electronic devices, facilitating the daily life of young people and adults, providing them with full life and limiting emotional stress and worry;
- Develop and dissemination of information materials and others.
The main target group of the project are people with disabilities, in particular those affected by the disease Aniridia. Their exact number is not yet determined, but according to the main medics involved in tracking the disease in the territory of the Republic of Bulgaria, carriers and affected individuals with Aniridia are over 40 people.
The project will contribute to facilitate their daily life, mainly through new information and advices, as well as a good tolerance on the part of other members of the society. Basic needs of the affected persons of Aniridia emphasizes the need for literature and information regarding the disease and the relative ability to reduce the secondary effects of the development of the disease and possible interventions ; ensure social equality and full life , understanding and tolerance from the society; use of specialized equipment to assist their daily lives and overcome the emotional stress.
Project duration: January 2014 – April 2015